CanChild is grateful to the above key partners for their financial and resource support: McMaster University, the Faculty of Health Sciences, the School of Rehabilitation Science, the Department of Pediatrics, and the McMaster Children’s Hospital Foundation.

VIDEO MESSAGE FROM THE DIRECTOR

“I would like to thank you for your ongoing commitment and invite you to be part of our journey as we sail into the future.”

Dr. Jan Willem Gorter
Director of CanChild & Professor of Pediatrics, McMaster University
Scotiabank Chair in Child Health Research

Research Highlights

CanChild’s international reputation rests on a combination of exemplary clinical and health services research, coupled with innovative and effective KT activities. Outlined below are the many research programs and projects that were ongoing throughout 2016!

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Research in Cerebral Palsy

Childhood Cerebral Palsy Integrated Neuroscience Discovery Network

The Childhood Cerebral Palsy Integrated Neuroscience Discovery Network (CP-NET) is an initiative funded by the Ontario Brain Institute designed to improve our understanding of cerebral palsy (CP) and accelerate the development of new treatments. CanChild houses the MyStory and Knowledge Translation components of the network and is one of the 9 recruitment sites for the Clinical Database component.
Knowledge Translation

CanChild works closely with an engaged Stakeholder Advisory Committee that includes families, youth and non-profit organizations to prioritize, plan, and disseminate all CP-NET Knowledge Translation activities and products. In 2016, the newly launched CP-NET website (“www.cp-net.org”) welcomed 23,500 unique visitors from 155 countries. Stakeholders were active partners throughout the development process, and nearly every image on the new site features families and children from the CP-NET community.

On October 5, 2016, CanChild spearheaded the 3rd annual CP-NET Science & Family Day. Held in celebration of World CP Day at Holland Bloorview Kids Rehabilitation Hospital, the event brought together a diverse audience of families, researchers, students, service providers and individuals with CP. In celebration of the day, CanChild, in collaboration with children, youth and adults with CP and their families, produced the video “Discover CP-NET” to promote CP-NET as a research organization.

Finally, two CP-NET webinars were facilitated in 2016, ”Genetic Factors in Cerebral Palsy and Pain prevention and treatment in children and young people with cerebral palsy. Webinars are presented in plain language with a family audience in mind, and provide an opportunity for audience questions. Webinars are recorded and archived on the CP-NET website so they may be accessed at any time.
Clinical Database - Understanding Risk Factors for Cerebral Palsy

A comprehensive CP-NET clinical database will allow researchers to study a variety of risk factors for CP, such as clinical risk factors occurring before, during and after childbirth. This data will be collected by conducting a detailed review of the child’s neonatal, medical and rehabilitation charts, along with maternal medical and obstetrical records. Other variables evaluated will include socio-demographic information, family history as well as diagnostic data. Clinically acquired imaging data from fMRIs will be obtained and will be read, classified, and coded to create a neuroimaging database. It is hoped that the information collected will support current and future CP-NET research questions and themes. Researchers at CanChild and McMaster University are actively recruiting and assessing children from the Hamilton and Niagara regions and 29 families have consented to participate.
My Story – Understanding the Health and Well-being of Youth and Young Adults with CP

Research has shown that youth with disabilities have complex journeys. They often have to navigate new environments with limited guidance, feel pressure to be independent, and lack resources and supports for successful transition into adulthood. Adolescents and young adults aged 16-30 years from across Ontario are being recruited to investigate the course of physical and mental health and well-being, and explore brain functioning and development. At the end of 2016, a total of 108 participants agreed to participate in this study. Twenty four participants completed year two of the study, and 11 participants completed year three of the study. Ten youth completed the EEG portion of the study, and 17 participated in the fMRI portion.

Learn more

On Track Study

The On Track Study is a large multi-site collaboration involving researchers, therapists, families, and children with cerebral palsy (CP) from across Canada and the United States. On Track used a prospective cohort design to assess changes in balance, range of motion limitations, strength, endurance, number and impact of health conditions, and participation in self-care, recreation, and leisure activities in 708 children with CP aged 1.5 to 11.9 years. Study aims are to:

create longitudinal growth curves and percentile graphs for physical development and participation to help health care professionals and parents monitor development; and

track if children are doing ‘as expected,’ ‘more than expected,’ or ‘less than expected.’

In the On Track study, seven mothers of children and young adults with cerebral palsy are members of the research team and have been involved throughout 2016 in the production of two videos featuring the family voice in research:

Checking Up and Checking In: Partnering with Families of Children with Cerebral Palsy", a video addressing families’ questions and sharing of assessments

Creating the Future: Engaging Children with Cerebral Palsy in the Circle of Care", a video featuring children engaged in family and community activities.

Enrollment to the On Track study closed in January 2015, with data collection ending August 2016. A total of 2,713 study visits were conducted throughout the course of the study, with 509 of those visits conducted in 2016. Data analysis began in the Fall of 2016, with knowledge translation activities ongoing in 2017. Members of the research team have presented On Track study information at several conferences internationally.

Learn more

Photo courtesy of Julie Brocklehurst.
Engaging families in research

Family Engagement Day 2016

The second Family Engagement Event was held in partnership with Kids Brain Health Network on April 2, 2016 to raise awareness of the research being conducted, encourage discussion around the future of childhood disability research and explore ways to work together to make a meaningful difference in the lives of children, youth and families impacted by disability. The day centred around the idea that “Research gives us hope” - an expression shared by a parent stakeholder at the first Family Engagement Day in 2014. Over 75 families, children, youth, students, service providers and researchers from across Hamilton and the Greater Toronto Area attended. The program included invited speaker talks by Connie Putterman (parent advocate) and Sacha Bailey (PhD candidate), panel presentations, round table discussions, and poster presentations. The interactive format of the day allowed families and researchers to network throughout the day. Feedback from attendees was positive with 97% saying they would attend the event again and 94% of participants satisfied/very satisfied with the event. One scientist stated “That was the first time I ever really felt the switch between an event being researched focused with the family perspective to being family focused with the research perspective.”

Parents Participating in Research (PPR) Group

The Parents Participating in Research (PPR) Facebook group was developed as a platform to bring together a diverse community of parents with special needs children and researchers to share ideas, and to explore opportunities for research. Led and moderated by two parents (partially funded by KBHN), the group now has a total of 130 members (110 family members and 20 researchers). With more than 50% of the activity initiated by community members, the Facebook Group is considered an established community with meaningful relationships established between parents and researchers. Parents and researchers have reported feeling safe and comfortable sharing and exchanging knowledge, which is a cornerstone to a successful partnership. The next step for the group is to provide more opportunities for active engagement in the research process.

In November 2016, an article on the PPR group was published in the Journal of Medical Internet Research. Three parents involved in the PPR Group are co-authors on this paper. The paper has received attention across social media platforms with 96 recorded tweets and 645 views in its first month.
Research in Epilepsy

Influence of Physical Activity Level on Health and Quality of Life in Children with Epilepsy.

The STeps for Children and Youth with EPilepsy (STEP) project is a multi-site longitudinal study of 120 participants and their families from two pediatric hospitals in Ontario: McMaster Children’s Hospital (MCH) and the Children’s Hospital of Eastern Ontario (CHEO). This study uses a prospective randomized control design to evaluate the effects of increasing physical activity levels on the study population.

December 2016 marked the end of active recruitment at MCH. Follow‐up visits will continue with those participants still needing to finish the study. MCH hopes to have all follow-up visits completed by March 2018. In addition to completing follow-up visits and interviews, the team at MCH is diligently working to enter and clean all data collected to date. Some of the demographic data will be used in a methodologies paper that is currently underway. The study will also use the data collected from the pedometers to drive proposals for future work. The study team hopes to build on the existing study and also use the data collected from the interviews to improve the intervention program. The study hopes to create a physical activity program that can be easily implemented by clinics caring for children and youth with epilepsy.
Improving School Health Support Services for Children with Special Needs

Partnering for Change

Partnering for Change (P4C) is a needs-based tiered approach to service delivery for children with special needs in the school. It incorporates current research findings, including evidence that early identification, self-management, prevention of secondary disability, and enhanced participation are the most appropriate foci of school-based occupational therapy.

In 2016, the P4C Model was recognized within the Program Guidelines for Integrated Delivery of Rehabilitation Services developed by the Ministry of Children and Youth Services as part of the Government of Ontario’s Special Needs Strategy. As a result, continued priorities include dissemination of research findings from the P4C Implementation and Evaluation Study, 2013-2015, and the development of educational materials to support transition to this model of service.

Implementation of the tiered P4C Model showed that transition to a new service delivery model in schools is highly complex and education is necessary to enact and sustain change. In recognition of this, the P4C team was invited to prepare an online training course to help support occupational therapists, physiotherapists and speech language pathologists to transition to a tiered model of school-based rehabilitation service. The course, titled Facilitating Integration of Rehabilitation Services through Training (FIRST) is being developed collaboratively with Dr. Anthony Levinson and the Division of e-Learning Innovation (DeLI) at McMaster University with funding from the Government of Ontario.

The FIRST course will be available free of charge at https://machealth.ca/.

Learn more
Improving Transition to Adult Healthcare

‘READYorNot’ Moving Ahead with Transition of Care from Adolescence to Adulthood

In April 2016, under Canada’s Strategy for Patient-Oriented Research (SPOR), the CHILD-BRIGHT study was funded. This initiative is comprised of 12 projects focused around novel interventions for optimizing development, promoting health outcomes, and delivering responsive and supportive services to children with brain-based disabilities and their parents.

Together with co-principal investigators Drs. Ariane Marelli (McGill University) and Khush Amaria (SickKids), Dr. Jan Willem Gorter launched the ‘READYorNot’ project which aims to

develop an innovative health technology platform-based intervention tailored to the needs of adolescence with brain based disorders;

test the ability of the intervention to demonstrate improvement in transition outcomes; and

carry out a knowledge-to-action phase to change practice.

The focus of activities in 2016 were to hire staff and engage stakeholders and consultants on the project. Moving forward in 2017, a McMaster-led team will build stakeholder engagement, seek qualitative input on stakeholders’ health technology needs and experiences, and design the intervention study for the project.

‘Teens Reaching Adulthood: Needs and Support for Improved Transitional care In ONtario (TRANSITION)

The journey from childhood to adult life involves reaching milestones, as well as assuming new roles and responsibilities. For the rapidly growing population of youth with chronic health conditions/disabilities, transition into the adult healthcare system is an important dimension of this journey. Sadly patients and families often describe the transfer of care as ‘falling off a cliff’ due to the lack of sufficient preparation, information, supports, and skills to facilitate the process.

A meeting was held in 2014 with over 30 stakeholders, including patients and parents, to identify transition “gaps” in Ontario, build an Ontario Transition Research Agenda, and develop a methodological platform to address the most urgent research questions. The group unanimously agreed on the need to develop an approach to improve transition that is collaborative and individualized based on patient need, as well as a method of risk stratification to ensure that optimal care is delivered.

A protocol was designed to 1) measure “transition readiness” in adolescents and young adults between the ages of 12-25 with a range of different chronic or complex health conditions, 2) further validate the TRANSITION-Q across 7 healthcare centres in Ontario, and 3) triangulate the “transition readiness” responses of participants, parents/caregivers, and healthcare providers. Data collection has been completed at the 7 sites, and analysis is underway. A follow up stakeholder meeting is being planned in order to review the study results and discuss future plans of the project.

Learn more
Research in Autism Spectrum Disorders (ASD)

Developing a tool to classify social communication in preschool children with ASD (ACSF:SC)

One of the challenges faced by clinicians and researchers in the field of ASD is how to categorize children's functional difficulties in a meaningful way. With funding from CIHR (2011-2015), researchers at CanChild worked in collaboration with parents and professionals to develop the Autism Classification System of Functioning: Social Communication (ACSF:SC) Tool and User Guide. In the spring of 2016, we published our work in the journal of Developmental Medicine and Child Neurology. Since it’s official launch in the English language, we have been approached with requests for the ACSF:SC in various languages. We are working on several translations, and will make all versions available by posting them on our website.

With funding from HAHSO (2015-2017), we actively recruited families throughout 2016 for an algorithm study that would help to further validate the ACSF:SC. Our objective with this study is to look at the relationship between the ADOS, a diagnostic measure completed by clinicians, and the parent completed ACSF:SC ratings. Having a valid and reliable algorithm will allow us to:

harvest earlier prospectively collected data and extract an ACSF:SC rating;

group functionally similar children;

enhance surveillance on children with ASD as currently collected by local and international colleagues; and

understand developmental patterns and factors that may influence the abilities of children with ASD.

Learn more
21st Century Thinking on Childhood Disability

The F-words in Childhood Disability Research and KT Program

Building on the ICF (WHO, 2001), the F-words in Childhood Disability takes a holistic and strengths based approach to thinking and talking about child health. In 2016, together with family and youth researchers, the F-words were presented at several meetings and workshops including:

CAPHC webinar (“The ‘F-words’ in childhood disability: A Call for ACTION – Bringing parents, clinicians, and researchers together”)

Grandview Children’s Centre Interprofessional Education and Development Day

European Academy of Childhood Disability in Stockholm, Sweden (“Partnership in knowledge exchange to translation – engaging in possibilities, opportunities, and challenges”)

CP-Net Science and Family Day at Holland Bloorview (“The F-words – a framework for supporting family well-being”)

OFCP Annual General Meeting (“Youth talk: 6 ‘F-words’ that won’t fill up your swear jar!”)

The original F-words in Childhood Disability publication became open access in 2016 and as of July 2016, the paper was downloaded approximately 6,750 times from the publisher’s website. CanChild also partnered with the Cerebral Palsy Alliance in Australia to create a F-words poster in honour of World CP Awareness Day (October 5^th, 2016). The poster has gained traction around the world and is now published in 15 different languages! Finally, in October 2016, the F-words in Childhood Disability Knowledge Hub was launched. To find out more on how the F-words are being disseminating and applied in practice across the globe please visit the interactive F-words Footprint.

Learn more

Photo courtesy of Veronica Rousseau.
Research in Concussion/Mild Traumatic Brain Injury

Safely Returning Children and Youth to Activity After Concussion (Back to Play Study)

The decision regarding return to activity following Mild Traumatic Brain Injury (mTBI)/concussion is one of the most difficult and controversial areas in concussion management. In 2014, Prof. DeMatteo and colleagues received funding from the Canadian Institutes of Health Research to evaluate the innovative Return to School and Return to Activity guidelines that were developed as part of a CanChild Knowledge Translation project. The enrolment to the “Back to Play” Study closed in December 2016 with a total of 139 families recruited. The team is currently engaged in data analysis. The interim analyses were presented at local, national and international conferences in 2016. Study progress was also shared with participating families in our 2016 newsletter.

Generating Innovation through the use of common data: improving the diagnosis and treatment of child and adolescent MTBI in Canada

Post-concussion symptoms in children may include cognitive, behavioural and physical deficits. These symptoms are often reported using different tools or methods making it difficult to compare between studies. In 2013, funding was received from CIHR to establish the feasibility, and utility of collecting common data elements for children and adolescents in 7 pediatric mTBI follow‐up programs across Canada. Two studies were carried out at CanChild. The first, “Generating Innovation through the use of common data: improving the diagnosis and treatment of child and adolescent mTBI in Canada” study closed enrolment in April 2016, and all participant assessments at CanChild were completed by October 2016. The second study entitled “Comparing Approaches to Rehabilitation for Children and Youth with Persisting Symptoms Following Concussion” focused on children and youth with persisting concussion symptoms. While all follow-up visits were completed for participants enrolled at the CanChild site in 2015, recruitment was still ongoing at other partnering sites across Canada in 2016. Both studies are currently at the final data analysis phase.

Pediatric Concussion Assessment of Rest and Exertion (PedCARE): A Randomized Controlled Trial

One-third of children and youth are found to experience concussive symptoms months, or even years, after their injury. Persistent Post-Concussion Symptoms (PPCS) can have a negative impact on various aspect of a youth’s life. The goal of this randomized controlled trial is to evaluate different concussion management protocols in their effectiveness of preventing PPCS. More specifically, the key is to determine the balance between physical rest and exertion in the recovery process. The PedCARE study was funded in 2016 and has held monthly teleconference meetings and received research ethics board approval. Recruitment will begin at the Children’s Hospital of Eastern Ontario in early 2017.

Learn more

Photo courtesy of Veronica Rousseau.
Development of a GMFM app

The Gross Motor Function Measure (GMFM) is a clinical tool designed to evaluate change in gross motor function in children with cerebral palsy, as well as to assist with realistic goal setting. With partial support from OBI CP-NET, CanChild responded to the expressed need for an updated, user-friendly, application version of the measure. With stakeholder input, CanChild has been working with developers at the MHealth & EHealth Development and Innovation Centre (MEDIC) at Mohawk College to create the GMFM App. The application is designed for both PC and mobile device (Android and iOS) users with features that include a modern interface and the ability to perform assessments at the touch of a finger. Two versions of the new application – a Client version meant for individual users and a Host version meant for environments with multiple users - are set to be launched in the Fall of 2017.

Research in Cerebral Palsy

RESEARCH IN CEREBRAL PALSY

Childhood Cerebral Palsy Integrated Neuroscience Discovery Network

The Childhood Cerebral Palsy Integrated Neuroscience Discovery Network (CP-NET) is an initiative funded by the Ontario Brain Institute designed to improve our understanding of cerebral palsy (CP) and accelerate the development of new treatments. CanChild houses the MyStory and Knowledge Translation components of the network and is one of the 9 recruitment sites for the Clinical Database component.

More

Knowledge Translation

CanChild works closely with an engaged Stakeholder Advisory Committee that includes families, youth and non-profit organizations to prioritize, plan, and disseminate all CP-NET Knowledge Translation activities and products. In 2016, the newly launched CP-NET website (“www.cp-net.org”) welcomed 23,500 unique visitors from 155 countries. Stakeholders were active partners throughout the development process, and nearly every image on the new site features families and children from the CP-NET community.

On October 5, 2016, CanChild spearheaded the 3rd annual CP-NET Science & Family Day. Held in celebration of World CP Day at Holland Bloorview Kids Rehabilitation Hospital, the event brought together a diverse audience of families, researchers, students, service providers and individuals with CP. In celebration of the day, CanChild, in collaboration with children, youth and adults with CP and their families, produced the video “Discover CP-NET” to promote CP-NET as a research organization.

Finally, two CP-NET webinars were facilitated in 2016, “Discover CP-NET”Genetic Factors in Cerebral Palsy and Pain prevention and treatment in children and young people with cerebral palsy. Webinars are presented in plain language with a family audience in mind, and provide an opportunity for audience questions. Webinars are recorded and archived on the CP-NET website so they may be accessed at any time.

Clinical Database – Understanding Risk Factors for Cerebral Palsy

A comprehensive CP-NET clinical database will allow researchers to study a variety of risk factors for CP, such as clinical risk factors occurring before, during and after childbirth. This data will be collected by conducting a detailed review of the child’s neonatal, medical and rehabilitation charts, along with maternal medical and obstetrical records. Other variables evaluated will include socio-demographic information, family history as well as diagnostic data. Clinically acquired imaging data from fMRIs will be obtained and will be read, classified, and coded to create a neuroimaging database. It is hoped that the information collected will support current and future CP-NET research questions and themes. Researchers at CanChild and McMaster University are actively recruiting and assessing children from the Hamilton and Niagara regions and 29 families have consented to participate.

My Story – Understanding the Health and Well-being of Youth and Young Adults with CP

Research has shown that youth with disabilities have complex journeys. They often have to navigate new environments with limited guidance, feel pressure to be independent, and lack resources and supports for successful transition into adulthood. Adolescents and young adults aged 16-30 years from across Ontario are being recruited to investigate the course of physical and mental health and well-being, and explore brain functioning and development. At the end of 2016, a total of 108 participants agreed to participate in this study. Twenty four participants completed year two of the study, and 11 participants completed year three of the study. Ten youth completed the EEG portion of the study, and 17 participated in the fMRI portion.

Learn more

On Track Study

The On Track Study is a large multi-site collaboration involving researchers, therapists, families, and children with cerebral palsy (CP) from across Canada and the United States. On Track used a prospective cohort design to assess changes in balance, range of motion limitations, strength, endurance, number and impact of health conditions, and participation in self-care, recreation, and leisure activities in 708 children with CP aged 1.5 to 11.9 years. Study aims are to:

- create longitudinal growth curves and percentile graphs for physical development and participation to help health care professionals and parents monitor development; and
- track if children are doing ‘as expected,’ ‘more than expected,’ or ‘less than expected.’

In the On Track study, seven mothers of children and young adults with cerebral palsy are members of the research team and have been involved throughout 2016 in the production of two videos featuring the family voice in research:

- Checking Up and Checking In: Partnering with Families of Children with Cerebral Palsy”, a video addressing families’ questions and sharing of assessments
- Creating the Future: Engaging Children with Cerebral Palsy in the Circle of Care”, a video featuring children engaged in family and community activities.

Enrollment to the On Track study closed in January 2015, with data collection ending August 2016. A total of 2,713 study visits were conducted throughout the course of the study, with 509 of those visits conducted in 2016. Data analysis began in the Fall of 2016, with knowledge translation activities ongoing in 2017. Members of the research team have presented On Track study information at several conferences internationally.

Learn more

Family Engagement

Family Engagement Day 2016

The second Family Engagement Event was held in partnership with Kids Brain Health Network on April 2, 2016 to raise awareness of the research being conducted, encourage discussion around the future of childhood disability research and explore ways to work together to make a meaningful difference in the lives of children, youth and families impacted by disability.

More

The day centred around the idea that “Research gives us hope” – an expression shared by a parent stakeholder at the first Family Engagement Day in 2014. Over 75 families, children, youth, students, service providers and researchers from across Hamilton and the Greater Toronto Area attended. The program included invited speaker talks by Connie Putterman (parent advocate) and Sacha Bailey (PhD candidate), panel presentations, round table discussions, and poster presentations. The interactive format of the day allowed families and researchers to network throughout the day. Feedback from attendees was positive with 97% saying they would attend the event again and 94% of participants satisfied/very satisfied with the event. One scientist stated “That was the first time I ever really felt the switch between an event being researched focused with the family perspective to being family focused with the research perspective.”

Parents Participating in Research (PPR) Group

The Parents Participating in Research (PPR) Facebook group was developed as a platform to bring together a diverse community of parents with special needs children and researchers to share ideas, and to explore opportunities for research. Led and moderated by two parents (partially funded by KBHN), the group now has a total of 130 members (110 family members and 20 researchers). With more than 50% of the activity initiated by community members, the Facebook Group is considered an established community with meaningful relationships established between parents and researchers. Parents and researchers have reported feeling safe and comfortable sharing and exchanging knowledge, which is a cornerstone to a successful partnership. The next step for the group is to provide more opportunities for active engagement in the research process.

In November 2016, an article on the PPR group was published in the Journal of Medical Internet Research. Three parents involved in the PPR Group are co-authors on this paper. The paper has received attention across social media platforms with 96 recorded tweets and 645 views in its first month.

Research in Epilepsy

Research in Epilepsy

Influence of Physical Activity Level on Health and Quality of Life in Children with Epilepsy.

The STeps for Children and Youth with EPilepsy (STEP) project is a multi-site longitudinal study of 120 participants and their families from two pediatric hospitals in Ontario: McMaster Children’s Hospital (MCH) and the Children’s Hospital of Eastern Ontario (CHEO). This study uses a prospective randomized control design to evaluate the effects of increasing physical activity levels on the study population.

More

December 2016 marked the end of active recruitment at MCH. Follow‐up visits will continue with those participants still needing to finish the study. MCH hopes to have all follow-up visits completed by March 2018. In addition to completing follow-up visits and interviews, the team at MCH is diligently working to enter and clean all data collected to date. Some of the demographic data will be used in a methodologies paper that is currently underway. The study will also use the data collected from the pedometers to drive proposals for future work. The study team hopes to build on the existing study and also use the data collected from the interviews to improve the intervention program. The study hopes to create a physical activity program that can be easily implemented by clinics caring for children and youth with epilepsy.

Partnering for Change

IMPROVING SCHOOL HEALTH SUPPORT SERVICES FOR CHILDREN WITH SPECIAL NEEDS

Partnering for Change

Partnering for Change (P4C) is a needs-based tiered approach to service delivery for children with special needs in the school. It incorporates current research findings, including evidence that early identification, self-management, prevention of secondary disability, and enhanced participation are the most appropriate foci of school-based occupational therapy.

More.

In 2016, the P4C Model was recognized within the Program Guidelines for Integrated Delivery of Rehabilitation Services developed by the Ministry of Children and Youth Services as part of the Government of Ontario’s Special Needs Strategy. As a result, continued priorities include dissemination of research findings from the P4C Implementation and Evaluation Study, 2013-2015, and the development of educational materials to support transition to this model of service.

Implementation of the tiered P4C Model showed that transition to a new service delivery model in schools is highly complex and education is necessary to enact and sustain change. In recognition of this, the P4C team was invited to prepare an online training course to help support occupational therapists, physiotherapists and speech language pathologists to transition to a tiered model of school-based rehabilitation service. The course, titled Facilitating Integration of Rehabilitation Services through Training (FIRST) is being developed collaboratively with Dr. Anthony Levinson and the Division of e-Learning Innovation (DeLI) at McMaster University with funding from the Government of Ontario.

The FIRST course is scheduled to be released in the fall of 2017 and will be available free of charge at https://machealth.ca/.

Learn more

Transitions

IMPROVING TRANSITION TO ADULT HEALTHCARE

‘READYorNot’ Moving Ahead with Transition of Care from Adolescence to Adulthood

In April 2016, under Canada’s Strategy for Patient-Oriented Research (SPOR), the CHILD-BRIGHT study was funded. This initiative is comprised of 12 projects focused around novel interventions for optimizing development, promoting health outcomes, and delivering responsive and supportive services to children with brain-based disabilities and their parents.

More.

Together with co-principal investigators Drs. Ariane Marelli (McGill University) and Khush Amaria (SickKids), Dr. Jan Willem Gorter launched the ‘READYorNot’ project which aims to

develop an innovative health technology platform-based intervention tailored to the needs of adolescence with brain based disorders;
test the ability of the intervention to demonstrate improvement in transition outcomes; and
carry out a knowledge-to-action phase to change practice.

The focus of activities in 2016 were to hire staff and engage stakeholders and consultants on the project. Moving forward in 2017, a McMaster-led team will build stakeholder engagement, seek qualitative input on stakeholders’ health technology needs and experiences, and design the intervention study for the project.

‘Teens Reaching Adulthood: Needs and Support for Improved Transitional care In ONtario (TRANSITION)

The journey from childhood to adult life involves reaching milestones, as well as assuming new roles and responsibilities. For the rapidly growing population of youth with chronic health conditions/disabilities, transition into the adult healthcare system is an important dimension of this journey. Sadly patients and families often describe the transfer of care as ‘falling off a cliff’ due to the lack of sufficient preparation, information, supports, and skills to facilitate the process.

A meeting was held in 2014 with over 30 stakeholders, including patients and parents, to identify transition “gaps” in Ontario, build an Ontario Transition Research Agenda, and develop a methodological platform to address the most urgent research questions. The group unanimously agreed on the need to develop an approach to improve transition that is collaborative and individualized based on patient need, as well as a method of risk stratification to ensure that optimal care is delivered.

A protocol was designed to 1) measure “transition readiness” in adolescents and young adults between the ages of 12-25 with a range of different chronic or complex health conditions, 2) further validate the TRANSITION-Q across 7 healthcare centres in Ontario, and 3) triangulate the “transition readiness” responses of participants, parents/caregivers, and healthcare providers. Data collection has been completed at the 7 sites, and analysis is underway. A follow up stakeholder meeting is being planned in order to review the study results and discuss future plans of the project.

Learn more

GMFM App

DEVELOPMENT OF A GMFM MAP

The Gross Motor Function Measure (GMFM) is a clinical tool designed to evaluate change in gross motor function in children with cerebral palsy, as well as to assist with realistic goal setting. With partial support from OBI CP-NET, CanChild responded to the expressed need for an updated, user-friendly, application version of the measure. With stakeholder input, CanChild has been working with developers at the MHealth & EHealth Development and Innovation Centre (MEDIC) at Mohawk College to create the GMFM App. The application is designed for both PC and mobile device (Android and iOS) users with features that include a modern interface and the ability to perform assessments at the touch of a finger. Two versions of the new application – a Client version meant for individual users and a Host version meant for environments with multiple users – are set to be launched in the Fall of 2017.

Research in ASD

RESEARCH IN AUTISM SPECTRUM DISORDERS (ASD)

Developing a tool to classify social communication in preschool children with ASD (ACSF:SC)

One of the challenges faced by clinicians and researchers in the field of ASD is how to categorize children’s functional difficulties in a meaningful way. With funding from CIHR (2011-2015), researchers at CanChild worked in collaboration with parents and professionals to develop the Autism Classification System of Functioning: Social Communication (ACSF:SC) Tool and User Guide. In the spring of 2016, we published our work in the journal of Developmental Medicine and Child Neurology. Since it’s official launch in the English language, we have been approached with requests for the ACSF:SC in various languages. We are working on several translations, and will make all versions available by posting them on our website.

More.

With funding from HAHSO (2015-2017), we actively recruited families throughout 2016 for an algorithm study that would help to further validate the ACSF:SC. Our objective with this study is to look at the relationship between the ADOS, a diagnostic measure completed by clinicians, and the parent completed ACSF:SC ratings. Having a valid and reliable algorithm will allow us to:

harvest earlier prospectively collected data and extract an ACSF:SC rating;
group functionally similar children;
enhance surveillance on children with ASD as currently collected by local and international colleagues; and
understand developmental patterns and factors that may influence the abilities of children with ASD.

Learn more

21st Century Thinking on Childhood Disability

21st Century Thinking on Childhood Disability

The F-words in Childhood Disability Research and KT Program

Building on the ICF (WHO, 2001), the F-words in Childhood Disability takes a holistic and strengths based approach to thinking and talking about child health. In 2016, together with family and youth researchers, the F-words were presented at several meetings and workshops including:

More

CAPHC webinar (“The ‘F-words’ in childhood disability: A Call for ACTION – Bringing parents, clinicians, and researchers together”)
Grandview Children’s Centre Interprofessional Education and Development Day
European Academy of Childhood Disability in Stockholm, Sweden (“Partnership in knowledge exchange to translation – engaging in possibilities, opportunities, and challenges”)
CP-Net Science and Family Day at Holland Bloorview (“The F-words – a framework for supporting family well-being”)
OFCP Annual General Meeting (“Youth talk: 6 ‘F-words’ that won’t fill up your swear jar!”)

The original F-words in Childhood Disability publication became open access in 2016 and as of July 2016, the paper was downloaded approximately 6,750 times from the publisher’s website. CanChild also partnered with the Cerebral Palsy Alliance in Australia to create a F-words poster in honour of World CP Awareness Day (October 5^th, 2016). The poster has gained traction around the world and is now published in 15 different languages! Finally, in October 2016, the F-words in Childhood Disability Knowledge Hub was launched. To find out more on how the F-words are being disseminating and applied in practice across the globe please visit the interactive F-words Footprint.

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Research in Concussion/mTBI

RESEARCH IN CONCUSSION/MILD TRAUMATIC BRAIN INJURY

Safely Returning Children and Youth to Activity After Concussion (Back to Play Study)

The decision regarding return to activity following Mild Traumatic Brain Injury (mTBI)/concussion is one of the most difficult and controversial areas in concussion management. In 2014, Prof. DeMatteo and colleagues received funding from the Canadian Institutes of Health Research to evaluate the innovative Return to School and Return to Activity guidelines that were developed as part of a CanChild Knowledge Translation project. The enrolment to the “Back to Play” Study closed in December 2016 with a total of 139 families recruited. The team is currently engaged in data analysis. The interim analyses were presented at local, national and international conferences in 2016. Study progress was also shared with participating families in our 2016 newsletter.

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Generating Innovation through the use of common data: improving the diagnosis and treatment of child and adolescent MTBI in Canada

Post-concussion symptoms in children may include cognitive, behavioural and physical deficits. These symptoms are often reported using different tools or methods making it difficult to compare between studies. In 2013, funding was received from CIHR to establish the feasibility, and utility of collecting common data elements for children and adolescents in 7 pediatric mTBI follow‐up programs across Canada. Two studies were carried out at CanChild.
The first, “Generating Innovation through the use of common data: improving the diagnosis and treatment of child and adolescent mTBI in Canada” study closed enrolment in April 2016, and all participant assessments at CanChild were completed by October 2016.
The second study entitled “Comparing Approaches to Rehabilitation for Children and Youth with Persisting Symptoms Following Concussion” focused on children and youth with persisting concussion symptoms. While all follow-up visits were completed for participants enrolled at the CanChild site in 2015, recruitment was still ongoing at other partnering sites across Canada in 2016. Both studies are currently at the final data analysis phase.

Pediatric Concussion Assessment of Rest and Exertion (PedCARE): A Randomized Controlled Trial

One-third of children and youth are found to experience concussive symptoms months, or even years, after their injury. Persistent Post-Concussion Symptoms (PPCS) can have a negative impact on various aspect of a youth’s life. The goal of this randomized controlled trial is to evaluate different concussion management protocols in their effectiveness of preventing PPCS. More specifically, the key is to determine the balance between physical rest and exertion in the recovery process. The PedCARE study was funded in 2016 and has held monthly teleconference meetings and received research ethics board approval. Recruitment will begin at the Children’s Hospital of Eastern Ontario in early 2017.

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Impact

“CanChild is the premier international research group that directs their efforts on research and dissemination for children with disabilities, their families and rehabilitation providers. They have set the worldwide standard for outreach and dissemination in the area of childhood wellness and disability” -Professor

IMPACT

Julia Hanes

Research Assistant & Youth Advisor

Connie Putterman

Parent Advisor

“I have been involved in a number of new initiatives in 2016, from editing research summaries to collaborating on a proposal for a new project with a research team. CanChild is at the forefront of patient oriented research, both in their attitudes and actions – for me it can only bring success to both families and the science in the short and long term. Well Done!”

Linda Nguyen

Master's Student

Jessica Geboers

Youth Advisor

“I’ve absolutely loved getting involved and meeting so many fantastic people who are just as passionate as I am about not only research, but innovation in the care and lives of people with disabilities.”

Patrick McPhee

PhD Candidate

Olaf Kraus De Camargo

Research Associate

“CanChild’s commitment to study and improve functioning and participation in children regardless of their diagnostic label fits well with my interests in applications of the International Classification of Functioning, Disability and Health. I can’t imagine a better team of people to collaborate and share this vision!”

“CanChild has had such a remarkable influence on the “culture of care and inclusion” for children in our region and we wish you continued success and many thanks!” -Parent

By the Numbers

CanChild has consistently been successful in securing funding, publishing papers and disseminating findings.

BY THE NUMBERS

Publications

CanChild members published 150 articles in 2016 in the areas of childhood disability, child health, methodology and knowledge translation. Featured below are a selection of these articles. To see a full list of 2016 articles, click on the button below!

Di Rezze, B., Rosenbaum, P., Zwaigenbaum, L., Hidecker, M.J.C., Stratford, P., Cousins, M., Camden, C., & Law, M. (2016). Developing a classification system of social communication functioning of preschool children with autism spectrum disorder. Developmental Medicine and Child Neurology, 58(9), 942-8.

Hodgetts, S., McConnell, D., Zwaigenbaum, L., & Nicholas, D. (2016). The Impact of Autism Services on Mothers Psychological Wellbeing. Child Care Health Development, [ePub ahead of print]. PMID:27620870

Missiuna, C., Pollock, N., Campbell, W., DeCola, C., Hecimovich, C., Sahagian Whalen, S., Siemon, J., Song, K., Gaines, R., Bennett, S., McCauley, D., Stewart, D., Cairney, J., Dix, L., & Camden, C. (2016). Identifying young students who are struggling in school using an innovative model of service delivery. British Journal of Occupational Therapy. 0(0), 1-10. doi:10.1177/0308022616679852

Novak, I., Walker, K., Hunt, R.W., Wallace, E., Fahey, M., & Badawi, N. (2016). Stem cell interventions for people with cerebral palsy: Systematic review with meta-analysis. Stem Cells and Translational Medicine, 5, 1014–1025.

Russell, D.J., Sprung, J., McCauley, D., Kraus de Camargo, O., Buchanan, F., Gulko, R., Martens, R., & Gorter, J.W. (2016). Knowledge Exchange and Discovery in the Age of Social Media: The Journey from Inception to Establishment of a Parent-Led Web-Based Research Advisory Community for Childhood Disability. Journal of Medicine Internet Research, 18(11), e293

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Albrecht, E., & Khetani, M.A. (2016). Environmental impact on young children’s participation in home-based activities. Developmental Medicine and Child Neurology. doi:10.1111/dmcn.13360

Alves, C., Magalhaes, L., Moreira, S., Silveira, I., Machado, M., & Viana, C.F.B. (2016). Factors associated with the development of preterm children at four and eight months of corrected gestational age. Journal of Human Growth and Development, 26, 41.

Alriksson-Schmidt, A., Arner, M., Westbom, L., Krumlinde-Sundholm, L., Nordmark, E., Rodby-Bousquet, E., & Hägglund, G. (2016). A Combined Surveillance Program and Quality Register Improves Management of Childhood Disability. Disability and Rehabilitation, 4, 1-7.

Alsem, M.W., Ausems, F., Verhoef, M., Jongmans, M.J., Meily-Visser, J.M., & Ketelaar, M. (2016). Information seeking by parents of children with physical disabilities: An exploratory qualitative study. Research in Developmental Disabilities, 60, 125-134.

Alsem, M.W., Verhoef, M., Gorter, J.W., Langezaal, L.C.M., Visser-Meily, J.M.A., & Ketelaar M. (2016). Parents’ perceptions of the services provided to children with cerebral palsy in the transition from preschool rehabilitation to school-based services. Child Care Health Development, 42(4), 455-63.

Anaby, D., Korner-Bitensky, N., Steven, E., Tremblay, S., Snider, L., Avery, L. & Law, M. (2016). Current rehabilitation practices for children with cerebral palsy: Focus and gaps. Physical and Occupational Therapy in Pediatrics, Early Online. doi:10.3109/01942638.2015.1126880

Anthony, S.J., Selkirk, E., Sung, L., Klaassen, R., Dix, D., & Klassen, AF. (2016). Quality of life of pediatric oncology patients: Do patient-reported outcome instruments measure what matters to patients. Quality of Life Research. Early Online. doi:10.1007/s11136-016-1393-4.

Armitage, S., McAnuff, J., Featherstone, J., & Kolehmainen, N. (2016). Implementing better healthcare: using audit and feedback to change therapists’ practice. Association of Paediatric Physiotherapists Journal, 7(1), 72-77.

Armitage, S., Swallow, V., & Kolehmainen, N. (2016). Ingredients and change process in occupational therapy for children: a grounded theory study. Scandinavian Journal of Occupational Therapy, 24(3), 208-213.

Armstrong, M., Morris, C., Abraham, C., & Tarrant, M. (2016). Interventions utilising contact with people with disabilities to improve children’s attitudes towards disability: a systematic review and meta-analysis. Disability and Health Journal, 10(1), 11-22. doi:org/10.1016/j.dhjo.2016.10.003

Armstrong, M., Morris, C., Tarrant, M., Abraham, C., & Horton, M. (2016). Rasch analysis of the Chedoke–McMaster Attitudes towards Children with Handicaps scale. Disability and Rehabilitation, 39(3), 281-290. doi:org/10.3109/09638288.2016.1140833

Assumpcao F.S.N.D., Faria-Fortini I.Z., Basilio M.L., Magalhaes L.C.,Carvalho A.C.D., Teixeira-Salmerla L.F. (2016). Adaptação transcultural do LIFE-H 3.1: um instrumento de avaliação da participação social. Cadernos de Saúde Pública, 32, 1-12, Online.

Bartlett, D.J., Chiarello, L.A., Hjorngaard, T., & Sieck Taylor, B. (2016). Moving from ‘parent consultant’ to ‘parent collaborator’: One pediatric research team’s experience. Disability and Rehabilitation, doi:10.1080/09638288.2016.1219402

Bartlett, D.J., Galuppi, B., Palisano, R.J., & McCoy, S.W. (2016). Consensus classifications of gross motor, manual ability, and communication function classification systems between therapists and parents of children with cerebral palsy. Letter to the Editor. Developmental Medicine and Child Neurology; 58, 98-99. PMID:26767662

Batorowicz, B., Stadskleiv, K., Von Tetzchner, S., & Missiuna, C. (2016). Children who use communication aids instructing peer and adult partners during play-based activity. Augmentative and Alternative Communication, 32(2), 105-119. doi:10.3109/07434618.2016.1160150

Benjamin, T., Lucas-Thompson, R., Little, L., Davies, P., & Khetani M.A. (2016). Participation in early childhood educational environments for young children with and without developmental disabilities and delays: A mixed methods study. Physical and Occupational Therapy in Pediatrics. doi:10.3109/01942638.2015.1130007

Bennett, S. (2016). Coaching: a school boards transition into inclusion. Journal of Research in Special Education Needs, (16), 897-899. doi:10.1111/1471-3802.12347_001_050

Blair, E., Smithers-Sheedy, H., & ACPR Group. (2016). Strabismus, a preventable barrier to social participation: a short report. Developmental Medicine & Child Neurology, Early online.

Blair, E., Watson, L., & ACPR Group (2016). Cerebral palsy and perinatal mortality after pregnancy-induced hypertension across the gestational age spectrum: observations of a reconstructed total population cohort. Developmental Medicine & Child Neurology, Early online.

Bonnard, M., & Anaby, D. (2016). Enabling Participation of Students through School-based Occupational Therapy Services: Towards a Broader Scope of Practice. British Journal of Occupational Therapy, 79(3), 188-192. doi:10.1177/0308022615612807

Brehaut, J.C., & Kohen, D.E. (2016). Complexity as a continuum of many health-related challenges. Developmental Medicine & Child Neurology, 58(11), 1099.

Brown, S.C., Johnston, B.C., Amaria, K., Watkins, J., Campbell, F., Pehora, C., & McGrath, P.A. (2016). A randomized controlled trial of amitriptyline versus gabapentin for complex regional pain syndrome type I and neuropathic pain in children. Scandinavian Journal of Pain.13, 156-163.

Brunton, L.K., & Bartlett, D.J. (2016). Construction and validation of the Fatigue Impact and Severity Self-Assessment. Developmental Neurorehabilitation, Early Online. doi:10.1080/17518423.2016.1189974

Cairney, J., Clinton, J., Veldhuizen, S., Rodriguez, C., Missiuna, C., Wade, T., Szatmari, P., & Kertoy, M. (2016). Evaluation of the Revised Nipissing District Developmental Screening (NDDS) Tool for use in general population samples of infants and children. BMC Pediatrics, 16(1), 42. doi:10.1186/s12887-016-0577-y

Caldwell, H.A.T., Proudfoot, N.A., King-Dowling, S., Di Cristofaro, N.A., Cairney, J., & Timmons, B.W. (2016). Tracking of physical activity and fitness during the early years. Applied Physical Nutrition Metabolism, 41(5), 504-10.

Cameron, D., Craig, T., Edwards, B., Missiuna, C., Schwellnus, H., & Polatajko, H. (2016). Cognitive Orientation to daily Occupational Performance (CO-OP): A New Approach for Children with Cerebral Palsy. Physical & Occupational Therapy in Pediatrics. doi:10.1080/01942638.2016.1185500 [Epub ahead of print]

Camden, C., Foley, V., Anaby, D., Shikako-Thomas, K., Gauthier-Boudreault, C., Berbari, J., & Missiuna, C. (2016). Using an evidence-based online module to improve parents’ ability to support their child with Developmental Coordination Disorder. Disability and Health Journal, 9(3), 406-415. doi:10.1016/j.dhjo.2016.04.002

Campbell, W., Camden, C., & Missiuna, C. (2016). Reflections on using a community-based and multisystem approach to transforming school-based intervention for children with developmental motor disorders. Current Developmental Disorders Reports, 3(2), 129-137. doi:10.1007/s40474-016-0081-y

Campbell, W., Kennedy, J., Pollock, N., & Missiuna, C. (2016). Screening children through response to intervention and dynamic performance analysis: The example of partnering for change. Current Developmental Disorder Reports, 3(3), 200-205. doi:10.1007/s40474-016-0094-6

Campbell, W., Selkirk, E., & Gaines, R. (2016). Speech-language pathologists’ role in inclusive education: A survey of clinicians’ perceptions of Universal Design for Learning. Canadian Journal of Speech-Language Pathology and Audiology, 40, 121-132.

Charman, T., Young, G., Brian, J., Carver, A., Carver, L., Chawarska, K., Curtin, S., Dobkins, K., Elsabbagh, M., Georgiades, S., Hertz-Picciotto, I., Hutman, T., Iverson, J., Jones, E., Landa, R., Macari, S., Messinger, D., Nelson, C., Ozonoff, S., Saulnier, C., Stone, W., Tager-Flusberg, H., Webb, S., Yirmiya, N., & Zwaigenbaum, L. (2016). Non-ASD Outcomes at 36 Months in Siblings at Familiar Risk for Autism Spectrum Disorder (ASD): A Baby Siblings Research Consortium (BSRC) Study. Autism Research. PMID: 27417857 [Epub ahead of print].

Chiarello, L.A.., Bartlett, D.J., Palisano, R.J., McCoy, S.W., Fiss, A.L., Jeffries, L., & Wilk, P. (2016). Determinants of Participation in Family and Recreational Activities of Young Children with Cerebral Palsy. Disability and Rehabilitation, 38, 2455-2468.

Christensen, R., Switzer, L., MacIntosh, A., & Fehlings, D. (2016). Change in pain status in children with cerebral palsy. Developmental Medicine and Child Neurology, 59(4), 374-379. doi:10.1111/dmcn.13328.

Cieza, A., Fayed, N., & Bickenbach, J. (2016). Refinements of the ICF Linking Rules to strengthen their potential for establishing comparability of health information. Disability and Rehabilitation, 1-10. doi:10.3109/09638288.2016.1145258

Conway, L., Smith, M.L., Ferro, M.A., Speechley, K.N., Connolly, M.B., Snead, O.C., Widjaja, E. & the PEPSQOL Study Team (2016). Correlates of health-related quality of life in children with drug resistant epilepsy. Epilepsia, 57(8), 1256-1264.

Coster, W.J., Ni, P., Slavin, M., Kisala, P., Nandakumar, R., Mulcahey, M.J., Tulsky, D., & Jette, A.M. (2016). Differential item functioning in PROMIS® pediatric short forms in a sample of children and adolescents with cerebral palsy. Developmental Medicine & Child Neurology, 58(11), 1132-1138. doi:10.1111/dmcn.13138

Crozier, S.C., Goodson, J.Z., Mackay, M., Synnes, A.R., Grunau, R.E., Miller, S.P., & Zwicker, J.G. (2016). Sensory processing patterns in children born very preterm. American Journal of Occupational Therapy, 70, 7001220050, 1-7.

Dahan-Oliel, N., Mazer, B., Shikako-Thomas, K., & Majnemer, A. (2016). Adolescents with disabilities participate in the shopping mall: Facilitators and barriers framed according to the ICF. Disability and Rehabilitation. 38(21), 2102-13.

D’Arrigo, R., Ziviani, J., Poulsen, A., Copley, J., & King, G. (2016). Child and parent engagement in therapy: What is the key? Australian Occupational Therapy Journal. Early online. doi:10.1111/1440-1630.12279

DeLacy, M.J., Louca, C., Smithers-Sheedy, H., McIntyre, S. & ACPR Group (2016). Change in residential remoteness during the first 5 years of life in an Australian cerebral palsy cohort. Developmental Medicine & Child Neurology, Early online.

De Schipper, E., Mahdi, S., de Vries, P., Granlund, M., Holtmann, M., Karande, S., Almodayfer, O., Shulman, C., Tonge, B., Wong, W., Zwaigenbaum, L., & Bolte, S. (2016). Functioning and Disability in Autism Spectrum Disorder: A Worldwide Survey of Experts. Autism Research, 9(9), 959-969.

Denver, B., Froude, E., Rosenbaum, P., Wilkes-Gillan, S., & Imms, C. (2016). Measurement of visual ability in children with cerebral palsy: A systematic review. Developmental Medicine & Child Neurology, 58(10),1016-1029. doi:10.1111/dmcn.13139

Di Rezze, B., Rosenbaum, P., Zwaigenbaum, L., Hidecker, M.J.C., Stratford, P., Cousins, M., Camden, C., & Law, M. (2016). Developing a classification system of social communication functioning of preschool children with autism spectrum disorder. Developmental Medicine and Child Neurology, 58(9), 942-8.

Dookhoo, L., Mahant, S., Parra, D.A., John, P.R., & Connolly, B.L. (2016). Peritonitis following percutaneous gastrostomy tube insertions in children. Pediatric Radiology,46 (10), 1444-50. doi: 10.1007/s00247-016-3628-5.

Dornelas, L.D.F., & Magalhaes, L.C. (2016). Desempenho funcional de escolares que receberam diagnóstico de atraso do desenvolvimento neuropsicomotor até os dois anos. Revista Paulista de Pediatria (Impresso), 34, 78-85.

Dornelas, L.F., Duarte, N.M.C., Morales, N.M.O., Pinto, R.R.H., Pereira, S.A., & Magalhaes, L.C. (2016). Functional Outcome of School Children with History of Global Developmental Delay. Journal of Child Neurology, 31, 1-11.

Ferro, M.A., Goodwin, S., Sabaz, M., & Speechley, K.N. (2016). Measurement equivalence of the newly developed Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55). Epilepsia, 57(3), 427-435.

Gagnon-Roy, M., Jasmin, E., & Camden, C. (2016). Social participation of teenagers and young adults with developmental co-ordination disorder and strategies that could help them: results from a scoping review. Child: Care, Health & Development, 42(6), 840-851.

Gannotti, M.E., Law, M., Bailes, A., O’Neil, M., Williams, U., & Di Rezze, B. & Expert Panel. (2016). Comparative Effectiveness Research and Children with Cerebral Palsy: Identifying a Conceptual Framework and Specifying Measures. Pediatric Physical Therapy; 28(1), 58-69.

Gao, Y., Shen, C., Xie, R., Sun, W., Asztalos, E., Moddemann, D., Zwaigenbaum, L., Walker, M., & Wen, S. (2016). New Perspective on Impact of Supplementation during Pregnancy on Neurodevelopment/Autism in the Offspring Children – A Systematic Review. PLoS One, 11(11), e0165626.

Garriguet, D., Carson, V., Colley, R.C., Janssen, I., Timmons, B.W., & Tremblay, M.S. (2016). Physical activity and sedentary behaviour of Canadian children aged 3 to 5. Health Reports, 27(9), 14-23.

Gentles, S.J., Charles, C., Nicholas, D.B., Ploeg, J., & McKibbon, KA. (2016). Reviewing the research methods literature: Principles and strategies illustrated by a systematic overview of sampling in qualitative research. Systematic Reviews, 11(5), 172. doi: 10.1186/s13643-016-0343-

Germani, T., Zwaigenbaum, L., Magill-Evans, J., Hodgetts, S., & Ball, G. (2016). Stakeholders’ Perspectives on Social Participation in Preschool Children with Autism Spectrum Disorder. Developmental Neurorehabilitation, 8, 1-8. doi:10.1080/17518423.2016.1214188

Gibson, B.E., King, G., Teachman, G., Mistry, B., & Hamdani, Y. (2016). Assembling activity/setting participation with disabled young people. Sociology of Health and Illness. doi: 10.1111/1467-9566.12496

Gold, J., Hall, M., Shah, S., Thomson, J., Subramony, A., Mahant, S., Mittal, V., Wilson, K.M., Morse, R., Mussman, G., Hametz, P., Montalbano, A., Parikh, K., Ishman, S., O’Neill, M., & Berry, J.G. (2016). Long length of hospital stay in children with medical complexity. Journal of Hospital Medicine, 11(11), 750-756. doi:10.1002/jhm.2633

Gorter, J.W, Galuppi, B.E., Gulko, R., Wright, M., & Godkin, E. (2016). Consensus planning toward a community-based approach to promote physical activity in youth with cerebral palsy. Physical & Occupational Therapy in Pediatrics, 37(1), 1-16.

Grant-Beuttler, M., Heriza, C., Palisano, R.J., Miller, D.P., Reddien Wagner, B., & Karduna, A. (2016). Ankle Movements during Supine Kicking in Infants Born Preterm. Pediatric Physical Therapy, 28, 294-302.

Hall, A., Finch, T., Kolehmainen, N., & James, D. (2016). Implementing a video-based intervention to empower staff members in an autism care organization: A qualitative study. BMC Health Services Research, 16(1), 608.

Herbert, D.L., Barnett, A.G., White, R., Novak, I., & Badawi, N. (2016). Funding for cerebral palsy research in Australia, 2000 to 2015: an observational study. BMJ Open, 6, e012924.

Hodgetts, S., McConnell, D., Zwaigenbaum, L., & Nicholas, D. (2016). The Impact of Autism Services on Mothers Psychological Wellbeing. Child Care Health Development. PMID:27620870

Hurtubise, K., Rivard, L., Héguy, L., Berbari, J., & Camden, C. (2016). Virtual knowledge brokering: Describing the roles and strategies used by knowledge brokers in a pediatric physiotherapy virtual community of practice. Journal of Continuing Education in the Health Profession,36(3), 186-194.

Imms, C. & Adair, B. (2016). Participation trajectories: impact of school transitions on children and youth with cerebral palsy. Developmental Medicine & Child Neurology. doi:10.1111/dmcn.13229

Imms, C., Froude, E., Adair, B., & Shields, N. (2016). A descriptive study of the participation of children and adolescents in activities outside school. BMC Pediatric, 16, 84. doi:10.1186/s12887-016-0623-9

Imms, C., Granlund, M., Wilson, P.H., Steenbergen, B., Rosenbaum, P., & Gordon, A. (2016). Participation – both a means and an end. A conceptual analysis of processes and outcomes in childhood disability. Developmental Medicine & Child Neurology. doi:10.1111/dmcn.13237

Imms, C., King, G., Majnemer, A., Avery, L., Chiarello, L.A., Palisano, RJ., Orlin, M. & Law, M. (2016). Leisure participation-preference congruence of children with cerebral palsy: a Children’s Assessment of Participation and Enjoyment International Network descriptive study. Developmental Medicine and Child Neurology, 59(4), 380-387. doi:10.1111/dmcn.13302

Imms, C., Wallen, M., Elliott, C., Hoare, B., Randall, M., Greaves, S., Adair, B., Bradshaw, E., Orsini, F., Shih, S.T.F., & Reddihough, D. (2016). Minimising impairment: Protocol for a multicenter randomized controlled trial of upper limb orthoses for children with cerebral palsy. BMC Pediatrics, 16, 70. doi:10.1186/s12887-016-0608-8

Jeevanantham, D., & Bartlett, D.J. (2016). Perspectives on classification of selected childhood neurodisabilities. Developmental Neurorehabilitation. doi:10.3109/17518423.2016.1139009

Jeffries, L., Fiss, A., McCoy, S.W., & Bartlett, D.J. (2016). Description of primary and secondary impairments in young children with cerebral palsy. Pediatric Physical Therapy, 28(1), 7-14. PMID:27088676.

Jeong, Y., Law, M., DeMatteo, C., Stratford, P., & Kim, H. (2016). Knowledge translation from research to clinical practice: Measuring participation of children with disabilities. Occupational Therapy and Health Care, 30(4), 323-343.

Jeong, Y., Law, M., Stratford, P., DeMatteo, C., & Kim, H. (2016). Cross-cultural validation and psychometric evaluation of the Participation and Environment Measure for Children and Youth in Korea. Disability and Rehabilitation, 38(22), 2217-2228.

Jirikowic, T., McCoy, S.W., Price, R., Ciol, M., Hsu, L.Y, & Kartin, D. (2016). Using Task-oriented Virtual Reality to Improve Sensory Control of Balance: A Pilot Study of Children with Fetal Alcohol Spectrum Disorders. Pediatric Physical Therapy, 28(4): 460-468. PMID: 27661243

Kamath, S., Fayed, N., Goodman, C., Streiner, D.L., & Ronen, G.M. (2016). Extracurricular Participation among Children with Epilepsy in Canada. Epilepsy Behaviour, 56, 118-122.

Kang, L.J., Hwang, A.W., Palisano, R.J., King, G.A., Chiarello, L.A., & Chen, CL. (2016). Validation of the Chinese Version of the Assessment of Preschool Children’s Participation for Children with Physical Disabilities. Developmental Neurorehabilitation, 8, 1-8. [Epub ahead of print].

Kapadia, M.Z., Joachim, K.C., Balasingham, C., Cohen, E., Mahant, S., Nelson, K.E., Maguire, J.L., Guttmann, A., & Offringa, M. (2016). A core outcome set for children with feeding tubes and neurologic impairment: A systematic review. Pediatrics, 138(1), doi:10.1542/peds.2015-3967.

Kawahara, J., Brown, C.J., Miller, S.P., Booth B.G., Chau, V., Grunau, R.E., Zwicker, J.G., Hamarneh, G. (2016). BrainNetCNN: Convolutional neural networks for brain networks: Towards predicting neurodevelopment. NeuroImage. doi:10.1016/j.neuroimage.2016.09.046. [Epub ahead of print]

Ketelaar, M., Bogossian, A., Saini, M., Visser-Meily, A., & Lach, L. (2016). Assessment of the family environment in pediatric neurodisability: a state-of-the-art review. Developmental Medicine and Child Neurology, doi:10.1111/dmcn.13287

Khetani, M.A. (2016). Capturing change: participation trajectories in cerebral palsy during life transitions. Developmental Medicine and Child Neurology. doi: 10.1111/dmcn/13260.

King, G. (2016). The role of the therapist in therapeutic change: How knowledge from mental health can inform pediatric rehabilitation. Physical and Occupational Therapy in Pediatrics, Early Online. doi:10.1080/01942638.2016.1185508

King, G., Kingsnorth, S., McPherson, A., Jones-Galley, K., Pinto, M., Fellin, M., Timbrell, N., & Savage, D. (2016). Residential immersive life skills programs for youth with physical disabilities: A pilot study of program opportunities, intervention strategies, and youth experiences. Research in Developmental Disabilities, 55, 242-255. doi:10.1016/j.ridd.2016.04.014

King, G., Orchard, C., Khalili, H., & Avery, L. (2016). Refinement of the Interprofessional Socialization and Valuing Scale (ISVS-21) and development of 9-item equivalent versions. The Journal of Continuing Education in the Health Professions, 36(3), 171-177. doi:10.1097/CEH.0000000000000082

King, G., Thomson, N. Rothstein, M.G., Kingsnorth, S., & Parker, K. (2016). Integrating research, clinical care, and education in Academic Health Science Centers: An organizational model of collaborative workplace learning. Journal of Health Organization and Management, 30(7), 1140-1160. doi: 10.1108/JHOM-11-2015-0177

Kraus de Camargo, O. (2016). Children Are the Future – Their Development Matters Report: First International Developmental Pediatrics Conference. Brazilian Journal of Medicine and Human Health, 4(1), 29–32.

Kraus de Camargo, O. (2016). Number of needs: a meaningful metric in childhood disability. Developmental Medicine and Child Neurology, 58, 532–533. doi:10.1111/dmcn.13129

Kruijsen-Terpstra, A.J., Ellen, M., Ketelaar, M., Verschuren, O., Di Rezze, B., Gorter, J.W., Visser-Meily, J.M.A., Jongmans, M.J. (2016). Child-Focused and Context-Focused Behaviors of Physical and Occupational Therapists during Treatment of Young Children with Cerebral Palsy. Physical and Occupational Therapy Pediatrics, 36(4), 363-75.

Kruijsen-Terpstra, A.J.A., Verschuren, O., Ketelaar, M., Riedijk, L., Gorter, J.W., Jongmans, M.J., Boeije, H. & the LEARN 2 MOVE 2-3 Study Group. (2016). Parents’ experiences and needs regarding physical and occupational therapy for their young children with cerebral palsy. Research in Developmental Disabilities, 53-54, 314-322.

Kwan, M., King-Dowling, S.A., Hay, J.A., Faught, B.E., & Cairney, J. (2016). Longitudinal Examination of Objectively-Measured Physical Activity and Sedentary Behaviors among Children with and without Developmental Coordination Disorder. Human Movement Science 47, 159-65.

Lagosky, S., Bartlett, D.J., & Shaw, L. (2016). Invisible work of using and monitoring knowledge by parents (end users) of children with chronic conditions. Knowledge Transfer Column: Making Information Work. Work, 55, 727-736.

Lauruschkus, K., Nordmark, E., & Hallström, I. (2016). Parents’ experiences of participation in physical activity for children with cerebral palsy – protecting and pushing towards independency. Disability and Rehabilitation. doi:10.3109/09638288.2016.1161841

Lim, C.Y., Law, M., Khetani, M.A., Pollock, N., & Rosenbaum, P. (2016). Participation in out-of-home environments for young children with and without developmental disabilities. OTJR: Occupation, Participation and Health, 36, 112-125.

Livingston, M.H., Cohen, E., Giglia, L., Pirrello, D., Mistry, N., Mahant, S., Weinstein, M., Connolly, B., Himidan, S., Butter, A., & Walton, M.J. (2016). Are some children with empyema at risk for treatment failure with fibrinolytics? A multicenter cohort study. Journal Pediatrics Surgery, 51(5), 832-7. doi:10.1016/j.jpedsurg.2016.02.032. [Epub ahead of print]

Love, S., Gibson, N., Smith, N., Bear, N., Blair, E. & ACPR Group (2016). Interobserver reliability of the Australian Spasticity Assessment Scale (ASAS). Developmental Medicine & Child Neurology, Early online.

Lucas, B.R., Elliott, E.J., Coggan, S.., Pinto, R.Z., Jirikowic, T., McCoy, S.W., & Latimer, J. (2016). Interventions to improve gross motor performance in children with neurodevelopmental disorders: a meta-analysis. BMC Pediatrics, 16(1), 193. PubMed PMID: 27899082

Ma, J.K., Post, M.W., Gorter, J.W., & Martin Ginis, K.A. (2016). Differences in health, participation and life satisfaction outcomes in adults following paediatric- versus adult-sustained spinal cord injury. Spinal Cord, https://dx.doi.org/10.1038/sc.2016.45

Mahant, S., & Parkin, PC. (2016). Apnea in bronchiolitis: Challenges of studying an uncommon complication of a common condition. The Journal of Pediatrics 2016, 177:11-12. doi:org/10.1016/j.jpeds.2016.06.038

Malik, F.S., Hall, M., Mangione-Smith, R., Keren, R., Mahant, S., Shah, S.S., Srivastava, R., Wilson, K.M., & Tieder, J.S. (2016). Patient characteristics associated with differences in admission frequency for diabetic ketoacidosis in United States Children’s Hospitals. Journal of Pediatrics, 171, 104-10. doi:10.1016/j.jpeds.2015.12.015. [Epub ahead of print]

Mancini, M.C., Coster, W.J., Amaral, M.F., Avelar, B.S., Freitas, R., & Sampaio, R.F. (2016). New version of the Pediatric Evaluation of Disability Inventory (PEDI-CAT): translation, cultural adaptation to Brazil and analyses of psychometric properties. Brazilian Journal of Physical Therapy, 20(6), 561-570.

McAnuff, J., Brooks, R., Duff, C., Quinn, M., Marshall, J., & Kolehmainen, N. Improving participation outcomes and interventions in neurodisability: co-designing future research. Child: Care, Health and Development,43(2), 298-306.

McIntyre, S., Blair, E., Goldsmith, S., Badawi, N., Gibson, C., Scott, H., Smithers-Sheedy, H. & ACPR Group (2016). Congenital anomalies in Cerebral Palsy: Where to from here? Developmental Medicine & Child Neurology. Early Online

McPhee, P.G., Brunton, L.K., Timmons, B.W., Bentley, T., & Gorter, J.W. (2016). Fatigue and its relationship with physical activity age, and body composition in adults with cerebral palsy. Developmental Medicine and Child Neurology. doi:10.1111/dmcn.13306. [Epub ahead of print]

McPherson, A.C., King, G., Rudzik, A., Kingsnorth, S., & Gorter, J.W. (2016). Optimizing life success through residential immersive life skills programs for youth with disabilities: Study protocol of a mixed-methods, prospective, comparative cohort study. BMC Pediatrics, 16(1), 153. doi:10.1186/s12887-016-0694-7

McPherson, A., Rudzik, A., Kingsnorth, S., King, G., Gorter, J.W., & Morrison, A. (2016). “Ready to take on the world’: Experiences and understandings of independence after attending residential immersive life skills programmes for youth with physical disabilities. Developmental Neurorehabilitation, Early Online. doi:10.3109/17518423.2016.1141254

McPherson, A., Swift, J.A., Peters, M., Lyons, J., Knibbe, T.J., Church, P., Chen, L., Farrell, R.M., & Gorter, J.W. (2016). Communicating about obesity and weight-relatd topics with children with a physical disability and their families: spina bifida as an example. Disability and Rehabilitation, 39(8), 791-797.

Miller, A.R., & Rosenbaum, P. (2016). Perspectives on ‘disease’ and ‘disability’ in child health: the case of childhood neurodisability. Frontiers in Public Health. doi:10.3389/fpubh.2016.00226

Missiuna, C., Pollock, N., Campbell, W., DeCola, C., Hecimovich, C., Sahagian Whalen, S., Siemon, J., Song, K., Gaines, R., Bennett, S., McCauley, D., Stewart, D., Cairney, J., Dix, L., & Camden, C. (2016). Identifying young students who are struggling in school using an innovative model of service delivery. British Journal of Occupational Therapy. 0(0), 1-10. doi:10.1177/0308022616679852

Morais, R.L.S., Carvalho, A.H., & Magalhaes, L.C. (2016). O contexto ambiental e o desenvolvimento na primeira infância: estudos brasileiros. Journal of Physical Education, 27, 2714-2728.

Morgan, C.J., Novak, I., Dale, R.C., Guzzetta, A., & Badawi, N. (2016). Single blind randomized controlled trial of GAME (Goals – Activity – Motor Enrichment) in infants at high risk of cerebral palsy. Research in Developmental Disabilities, 55, 256-267.

Morris, C., Blake, S., Stimson, A., Borek, A., & Maguire, K. (2016). Resources for parents raising a disabled child in the UK. Paediatrics and Child Health, 26(9), 406–408.

Mulcahey, M.J., Slavin, M.D., Ni, P., Vogel, L.C., Thielen, C.C., Coster, W.J., & Jette, A.M. (2016). The Pediatric Measure of Participation (PMoP) short forms. Spinal Cord, 54(12), 1183-1187. doi:10.1038/sc.2016.68

Mulvale, G., Nguyen, T., Miatello, A., Embrett, M., Wakefield, P., & Randall, G.E. (2016). Lost in Transition or Translation? Care Philosophies and Transitions between Child and Youth and Adult Mental Health Services: A Systematic Review. Journal of Mental Health. doi:10.3109/09638237.2015.1124389

Muskat, B., Greenblatt, A., Nicholas, D., Ratnapalan, S., Cohen-Silver, J., Newton, A., Craig, W., Kilmer, C., & Zwaigenbaum, L. (2016). Parent and Health Care Provider Perspectives Related to Disclosure of Autism Spectrum Disorder in Pediatric Emergency Departments. Autism, 20(8), 986-994.

Nelson, K.E., Rosella, L.C., Mahant, S., & Guttman, A. (2016). Survival and surgical interventions for children with trisomy 13 and 18. JAMA, 316, 420-428.

Nguyen, T., Henderson, D., Stewart, D., Hlyva, O., Punthakee, Z., Gorter, J.W. (2016). You never transition alone! Exploring the experiences of youth with chronic health conditions, parents and healthcare providers on self-management. Child: Care, Health, and Development, 42(4), 464–472. doi:10.1111/cch.12334

Nicholas, D., Zwaigenbaum, L., Muskat, B., Craig, W., Newton, A., Kilmer, C., Greenblatt, A., Roberts, W., & Cohen-Silver, J. (2016). Experiences of Emergency Department Care from the Perspective of Families in which a Child has Autism Spectrum Disorder. Social Work in Health Care, 55(6), 409-426.

Nicholas, D., Hodgetts, S., Zwaigenbaum, L., Smith, L., Shattuck, P., Parr, J., Conlon, O., Germani, T., Mitchell, W., Sacrey, L., & Stothers, M. (2016). Research needs and priorities for transition and employment in Autism: Considerations reflected in “Special Interest Group” at the International Meeting for Autism Research. Autism Research, Early online. PMID: 27753278

Nicholas, D., Zwaigenbaum, L., Muskat, B., Craig, W., Newton, A., Cohen-Silver, J., Sharon, R., Greenblatt, A., & Kilmer, C. (2016). Toward Practice Advancement in Emergency Care for Children with Autism Spectrum Disorder. Pediatrics, 137.

Novak, Z., Aglipay, M., Barrowman, N., Yeates, K., Beauchamp, M., Gravel, J., Freedman, S., Gagnon, I., Gioia, G., Boutis, K., Burns, E., Ledoux, A-A., Osmond, M., Zemek, R., & PERC 5P Concussion Team. (2016). Association of Persistent Postconcussion Symptoms with Pediatric Quality of Life. JAMA Pediatrics, E1-E8, Early online.

Novak, I., Walker, K., Hunt, R.W., Wallace, E., Fahey, M., & Badawi, N. (2016). Stem cell interventions for people with cerebral palsy: Systematic review with meta-analysis. Stem Cells and Translational Medicine, 5, 1014–1025.

Prakash, V., Patel, A.M., Hariohm, K., & Palisano, R.J. (2016). Higher Levels of Caregiver Strain Perceived by Indian Mothers of Children and Young Adults with Cerebral Palsy who have Limited Self-mobility. Physical & Occupational Therapy in Pediatrics, 16, 1-10. [Epub ahead of print].

Reid, S.M., Meehan, E., McIntyre, S., Goldsmith, S., Badawi, N., Reddihough, D.S., & ACPR Group. (2016). Temporal trends in cerebral palsy by impairment severity and birth gestation. Developmental Medicine & Child Neurology, Early online.

Reid, S.M., Meehan, E., Gibson, C.S., Scott, H., Delacy, M., & ACPR Group (2016). Biological sex and the risk of cerebral palsy in Victoria, Australia. Developmental Medicine & Child Neurology, Early online.

Ritzema, A.M., Lach, L., Rosenbaum, P., & Nicholas, D. (2016). About My Child: Measuring ‘Complexity’ in Neurodisability. Evidence of Reliability and Validity. Child: Care, Health and Development, 42(3), 402–409.

Ronen, G.M. (2016). Patient-Reported Outcomes Measures (PROMs) in children with chronic health conditions: Terminology and Utility. Developmental Medicine and Child Neurology, 58(9), 896-897.

Ronen, G.M., & Streiner, D.L. (2016). Child and Parent-Reported Health: the Rashōmon Effect of Multi-realities. The Journal of Pediatrics, 179, 17-18.

Ronen, G.M., & Rosenbaum, P.L. (2016). Rett Syndrome Turns 50: Themes from a Chronicle: Medical Perspectives and the Human Face of RTT. Pediatric Neurology, 61, 3-10.

Rosenbaum, P. (2016). Changing the Discourse: We Must All Be Knowledge Brokers. Editorial, Developmental Medicine and Child Neurology, 58(12), 1204.

Russell, D.J., Sprung, J., McCauley, D., Kraus de Camargo, O., Buchanan, F., Gulko, R., Martens, R., & Gorter, J.W. (2016). Knowledge Exchange and Discovery in the Age of Social Media: The Journey from Inception to Establishment of a Parent-Led Web-Based Research Advisory Community for Childhood Disability. Journal of Medicine Internet Research, 18(11), e293.

Savoy, C., Ferro, M.A., Schmidt, L.A., Saigal, S., & Van Lieshout, RJ. (2016). Prenatal betamethasone exposure and psychopathology risk in extremely low birth weight survivors in the third and fourth decades of life. Psychoneuroendocrinology, 74, 278-285.

Scime, N., Bartlett, D., Brunton, L.K., & Palisano, R.J. (2016). Parents’ experiences and perceptions when classifying their children with cerebral palsy: Recommendations for service providers. Physical and Occupational Therapy in Pediatrics, Early online. doi:10.1080/01942638.2016.1185505

Schenker, R., Parush, S., Rosenbaum, P., Rigbi, A., & Yochman, A. (2016). Is a family-centred initiative a family-centred service? A case of a Conductive Education setting for children with cerebral palsy. Child Care Health Development, 42(6), 909-917.

Sharda, M., Foster, N., Tryfon, A., Doyle-Thomas, K., Ouimet, T., Anagnostou, E., Evans, A., Zwaigenbaum, L., Lerch, J., Lewis, J., & Hyde, K. (2016). Language Ability Predicts Cortical Structure and Covariance in Boys with Autism Spectrum Disorder. Cerebral Cortex, Early online. PMID: 26891985

Smart, E., Aulakh, A., McDougall, C., Rigby, P., & King, G. (2016). Optimizing engagement in goal pursuit with youth with physical disabilities attending life skills and transition programs: An exploratory study. Disability and Rehabilitation, Early Online. doi:10.1080/09638288.2016.1215558

Smart, E., Kingsnorth, S., Crossman, S., Sheffe, S., Curran, C.J., Pinto, M., Edwards, B. & King, G. (2016). Creating an inclusive leisure space: strategies used to engage children with and without disabilities in the arts-mediated program Spiral Garden. Disability and Rehabilitation, Early online. doi:10.1080/09638288.2016.1250122

Smithers-Sheedy, H., Mcintyre, S. Gibson, C., Meehan, E., Scott, H., Goldsmith, S., Watson, L., Badawi, N., Walker, K., Novak, I., Blair, E., & on behalf of the Australian Cerebral Palsy Register Group (2016). A special supplement: findings from the Australian Cerebral Palsy Register, birth years 1993 to 2006. Developmental Medicine and Child Neurology, Early Online. doi:10.1111/dmcn.13026

Stinson, J., Ahola Kohut, S., Forgeron, P., Amaria, K., Bell, M., Kaufman, M., Luca, N., Luca, S., Harris, L., Victor, C., Spiegel, L. (2016). The iPeer2Peer Program: a pilot randomized controlled trial in adolescents with Juvenile Idiopathic Arthritis. Pediatric Rheumatology, 14(1), 48. doi:10.1186/s12969-016-0108-2

Syed, I., Nathan, P., Barr, R., Rosenberg-Yunger, Z., D’Agostino, N.M., & Klassen, A.F. (2016). Examining factors associated with self-management skills in teenaged survivors of childhood and adolescent cancer. Journal of Cancer Survivorship, 10(4), 686-91. doi:org/10.1007/s11764-016-0514-y.

Thomas-Stonell, N., Robertson, B., Oddson, B. & Rosenbaum, P. (2016). Communicative Participation Changes in Preschool Children Receiving Augmentative and Alternative Communication Intervention. International Journal of Speech-Language Pathology. 18(1), 332-40. doi:10.3109/17549507.2015.1060530

Toovey, R., Reid, S,M., Rawicki, B., Harvey, A.R., & Watt, K. (2016). Ability of independently ambulant children with cerebral palsy to ride a two-wheel bike: a case control study. Developmental Medicine and Child Neurology, Early online.

Tucker, P., Burke, S.M., Gaston, A., Irwin, J.D., Johnson, A.M, Timmons, B.W., Vanderloo, L.M., & Driediger, M. (2016). Supporting Physical Activity in the Childcare Environment (SPACE): Rationale and study protocol for a cluster randomized controlled trial. BMC Public Health, 16, 112.

Vaillancourt, T., Haltigan, J., Smith, I., Zwaigenbaum, L., Szatmari, P., Fombonne, E., Waddell, C., Duku, E., Mirenda, P., Georgiades, S., Bennett, T., Volden, J., Elsabbagh, M., Roberts, W., & Bryson, S. (2016). Joint trajectories of internalizing and externalizing problems in preschool children with autism spectrum disorder. Development and Psychopathology, 5, 1-12.

Vanderkaay, S., Moll, S., Loyola, A., Gewurtz, R., Jindal, P., Packham, T., & Lim, C. (2016). Qualitative Research in Rehabilitation Science: Opportunities, challenges and future directions: Disability and Rehabilitation, 1-9.

Verschuren, O., McPhee, P., Rosenbaum, P., & Gorter, J.W. (2016). The formula for health and well-being in individuals with cerebral palsy: physical activity, sleep, and nutrition. Developmental Medicine and Child Neurology, 58(9), 989-90.

Verschuren, O., & Peterson, M.D. (2016). Nutrition and physical activity in people with cerebral palsy: opposite sides of the same coin. Developmental Medicine and Child Neurology, 58(5), 426

Verschuren, O., Peterson, M.D., Balemans, A.C., & Hurvitz, E.A. (2016). Exercise and physical activity recommendations for people with cerebral palsy. Developmental Medicine Child Neurology, 58(8), 798-808.

Vos, R.C., Becher, J.G., Voorman, J.M., Gorter, J.W., van Eck, M., van Meeteren, J., Smits, D.W., Twisk, J.W.R, Dallmeijer, A.J., & PERRIN+ Study Group. (2016). Longitudinal association between gross motor capacity and neuromusculoskeletal function in children and youth with cerebral palsy. Archives of Physical Medicine and Rehabilitation, 97(8), 1329-1337.

Wickert, N., Wong, K., Mansour, M., Goodacre, T., Forrest, C., Pusic, A., & Klassen, A.F. (2016). Content validity of patient reported outcome instruments used with pediatric patients with facial differences: a systematic review. Cleft Palate Craniofacial Journal. [Epub ahead of print]

Zaidman-Zait, A., Mirenda, P., Duku, E., Vaillancourt, T., Smith, I., Szatmari, P., Bryson, S., Fombonne, E., Volden, .J, Waddell, C., Zwaigenbaum, L., Georgiades, S., Bennett, T., Elsabaggh, M., & Thompson, A. (2016). Impact of personal and social resources on parenting stress in mothers of children with autism spectrum disorder. Autism. PMID: 27091948

Zemek, R., Grool, A., Rodriguez Duque, D., DeMatteo, C., Rothman, L., Benchimoi, E., Guttmann, A., & MacPherson, A. (2016). Annual and seasonal trends in ambulatory visits for pediatric concussion in Ontario between 2003 and 2013. The Journal of Pediatrics. doi:10.1016/j.jpeds.2016.10.067

Zemek, R., Barrowman, N, Freedman, S.B., Gravel, J., Gagnon, I., McGahern, C., Aglipay, M., Sangha, G., Boutis, K., Beer, D., Craig, W., Burns, E., Farion, K., Mikrogianakis, A., Barlow, K., Dubrovsky, A.S, Meeuwisse, W., Gioia, G., Meehan, W.P., Beauchamp, M., Kamil, Y., Grool, A.M., Hoshizaki, B., Anderson, P., Brooks, B., Yeates, K.O., Vassilyadi, M., Klassen, T., Keightley, M., Richer, L., & DeMatteo C. (2016). Clinical Risk Score for Persistent Postconcussion Symptoms Among Children with Acute Concussion in the ED. JAMA Pediatrics, 315(10), 1014-1025. doi:10.1001/jama.2016.1203

Zwaigenbaum, L., Nicholas, D., Muskat, B., Kilmer, C., Newton, A., Craig, W., Ratnapalan, S., Cohen-Silver, J., Greenblatt, A., Roberts, W., & Sharon, R. (2016). Perspectives of Health Care Providers Regarding Emergency Department Care of Children and Youth with Autism Spectrum Disorder. Journal of Autism Developmental Disorders, 46(5), 1725-36.

Zwicker, J.G., Miller, S.P., Grunau, R.E., Chau, V., Brant, R., Studholme, C., Liu, M., Synnes, A., Poskitt, K.J., Stiver, M.L., & Tam, E.W. (2016). Smaller cerebellar growth and poorer neurodevelopmental outcomes in very preterm infants exposed to morphine. Journal of Pediatrics, 172(2), 81-87. doi:10.1016/j.jpeds.2015.12.024

Presentations

103 invited presentations/keynotes for 2016

In 2016, CanChild members presented 88 invited lectures and 15 keynotes around the world. Featured below are a few of these presentations:

In April 2016, Dr. Cheryl Missiuna presented two keynotes at the 3rd #CountMeIn! Scientific Meeting: Supporting children’s participation – evidence and interventions in the United Kingdom. Her talks focused on supporting and increasing the participation of children with special needs in the school setting.

Dr. Iona Novak was a keynote speaker at the International Conference on Cerebral Palsy and other Childhood-onset Disabilities (June 2016) in Stockholm, Sweden. Her talk was on Early Intervention.

In October 2016, Dr. Bob Palisano presented at the Chinese Association of Early Intervention Program for Children with Developmental Delays in Taipei, Taiwan. His talk focused on “Participation-based Early Intervention: Promoting Family and Professional Collaboration”.

Dr. Peter Rosenbaum presented three keynotes at the 11^th Annual Conference of the Indian Academy of Cerebral Palsy, November 2016, Bangalore, India.

Dr. Keiko Shikako-Thomas presented two invited talks in Brazil (November 2016). Her talks focused on pediatric rehabilitation and knowledge translation.

Grants

More than 53 million dollards in research funding for 2016

CanChild members held 70 funded research grants (as Principal Investigator, Co-Investigator or Collaborator) and 2 infrastructure grants related to child health, childhood disability, methodology or knowledge translation. Funding totaled more than 53M across projects.

As Principal Investigator or co-Principal Investigator, CanChild members were awarded more than $30M CAD, $7M AUS, $1.5M USD, £500K BP and €40K EURO.

CanChild Scientists at McMaster University received approximately $3M in 2016 for research conducted to further the field of child health/disability.

View full grants list.

Advance QLD Funding. $1,500,000 (AUS). 2016. Early Detection of Cerebral Palsy. Novak, I. (PI).

American Academy for Cerebral Palsy and Developmental Medicine/Pedal with Pete Research Grant. $24,561 (US). 2016-2017. Linking Neuroplasticity with the Outcomes of Walking-based Interventions: A Feasibility Trial Comparing a Motor Learning versus a Strength-based Program in Children with Cerebral Palsy. Wright, V. (PI), Taylor, M., Fehlings, D., Chen, J., Hilderley, A.

American Occupational Therapy Foundation. $49,976 (US). 2016-2017. Feasibility Test of a Pediatric Web-Based Care Planning Guide. Khetani, M. (PI), Bedell, G., Anaby, D.

Autism Speaks – Family Services Community Grant. $63,051. 2016. Preparing youth with autism spectrum disorder for employment: A cross-context transitions approach. Di Rezze, B. (PI), Georgiades, S., Brennen, R., Honeyman, S., Hall, G., Bennett, T., O’Connor, I., Al Balkhi, S., and the MacART Study Team.

Avon Maitland District School Board. $15,000. 2016. The Avon Maitland District School Board Inclusion Coaching Project. Bennett, S. (PI), Gallagher, T.

Bloorview Research Institute. $9,995. 2016-2018. Bridging Neonatal and Development/Rehabilitation Services to Co-create Better Transitions for Parents of Preterm Children with Cerebral Palsy. Ballantyne, M. (PI), Bernardo, S., Orava, T., McPherson, A., Church, P., Fehlings, D., & Cohen, E.

Bloorview Research Institute. Centre for Leadership in Child Development. $10,000. 2016-2017. Strengthening Practice Through Partnerships: Supporting Parents of Children with Cerebral Palsy as they Transition from Neonatal Follow-Up to Developmental/Rehabilitation Services. Bloorview Research Institute (ON). Ballantyne, M. (PI), Orava, T., Bernardo, S., Sozer, A., McPherson, A., Church, P., Fehlings, D., & Cohen, E.

Bloorview Research Institute. Centre for Leadership. $20,000. 2016-2017. Use of the Lokomat Robotic Gait Trainer in the Early Stage Rehabilitation of Children and Youth following Acquired Brain Injury: A Feasibility Study. PI: Hung, R. (PI), Wright, V. (PI), Ryan, J., Fehlings, D., Ritchie, L., Brewer, K., Kirkwood, G., Cheng, V., Lee, T., Wright, L., Bernstein, J., Woodhouse, J.

Bloorview Children’s Hospital Foundation. $11,000. 2016-2017. Validation of the Pediatric Family Needs Questionnaire (FNQ-P) in the United Kingdom and Lithuania. Wright, V. (PI), Gan, C. (co-PI), Prasauskiene, A., Dunford, C., Hardman, T., St. Jean, S., Gravel, K., Ballantyne, M., Sheffe, S.

Brock University (Faculty Research and Development Grant). $977. 2016. Occupational Therapists in school settings. Bennett, S. (PI).

Canadian Institutes of Health Research. $6,500. 2016. Adaptive Use Music Instrument for Children with Developmental Disabilities. Shikako-Thomas, K. (PI), Lewis, E. (PI), Bergeron, N., Wanderley, M., Blain-Moraes, S., Weinstock, D., Joseph, L., & Hattwick, I.

Canadian Institutes of Health Research. $100,000. 2016-2017. Development of a mental health module for the COMPASS system: improving youth mental health trajectories. Leatherdale, S.T. (PI), Cairney, J., Elton-Marshall, T., Faulkner, G., Henderson, J., Mann, R., Sabiston, C., & Patte, K.

Canadian Institutes of Health Research. $1,433,440. 2016-2021. Brock Healthy Youth Project. Willoughby, T. (PI), Boyle M.H., Cairney, J., Crone, E., Falk, B., Goldman, D., Henderson, J.L., Klentrou, P.N., Mccormick, C.M., Morrish, J.A., Mushquash, C.J., O’Leary, D.D., Schmidt, L.A., Segalowitz, S.J., Shulman, E., Wade, T.J.

Canadian Institutes of Health Research. $100,000. 2016-2017. Adverse Childhood Experiences (ACEs), Blood Pressure, and Cardiovascular Structure and Function from Childhood to Early Adulthood. Cairney, J., Wade, T. J., & O’Leary, D. (co-PIs).

Canadian Institutes of Health Research. $248,668. 2016-2018. Evaluation of the Healthy Kids Community Challenge in Early Childhood. Anderson, L.N. & Birken, C.S. (Co-PIs), Cairney, J., Harrington, D., Maguire, J.L., Manson, J., Parkin, P.C., Pullenayegum, E., Tremblay, M., & Wahi, G.

Canadian Institutes of Health Research. $607,778. 2016-2019. Intermittent vs. Continuous Oxygen Saturation Monitoring in Infants Hospitalized for Bronchiolitis: A Randomized Controlled Trial. Mahant, S. (PI), Moretti, M., Parkin, P., Pound, C., Schuh, S., Wahi, G., & Willan, A.

Canadian Institutes of Health Research (CIHR). $15,000. 2016-2017. Implantation d’un partenariat visant l’application des connaissances integree sur le trouble d’acquisition de la coordination afin de promouvoir la participation sociale des enfants (PRO2-TAC): Quelles sont les priorites des principaux acteurs? Camden, C. (PI), Bouffard, C., Brossard-Racine, M., Cantin, N., Couture, M., Farmer, M., Jasmin, E., Kalubi, J. C., Lessard, A., Maltais, D., McLoed, A., Nadeau, M. F., Snider, L., & Tousignant, M.

Canadian Institutes of Health Research (CIHR) and Matched Foundation/Private Funding. $25,000,000. 2016-2021. CHILD-BRIGHT: Child Health Initiatives Limiting Disability – Brain Research Improving Growth and Health Trajectories. Majnemer, A. (PI), Cohen, E., Goldowitz, D., Gorter, J.W., Kirton, C., Lach, L., Marelli, A., MacGrath, P., Miller, S. (co-PIs).

Canadian Institutes of Health Research (CIHR). $1,238,491. 2016-2021. Multimorbidity in children and youth across the lifecourse (MY LIFE). Ferro, M. (PI), Boyle, M., Georgiades, K., Gorter, J.W., Lipman, E., Shanahan, L., Timmons, B., & Van Lieshout, R.

Canadian Institutes of Health Research (CIHR). $14,994. 2016-2017. The Stakeholders Partnering for Arthrogryposis Research: Client-Centered Care and Collaboration (SPARC-Collaboration). Dahan-Oliel, N. (PI), Hamdy, R., Rosenbaum, P., Sawatzky, B.

Canadian Institutes of Health Research (CIHR). $9,876,973. 2016-2023. An Epidemiologic Research Program to Improve Maternal and Child Health. Wen, S. W. (PI), Walker, M.C. (PI), Zwaigenbaum, L. (co-I).

Canadian Institutes of Health Research (CIHR). $100,000. 2016-2017. Update of the Canadian Sedentary Behaviour Guidelines for the Early Years. Carson, V.L. (PI), Duggan, M. (PI), Tremblay, M.S. (PI), Adamo, K., Birken, C., Choquette, L., Connor Gorder, S.K., Costas-Bradstreet, C., Faulkner, G., Goldfield, G.S., Gray, C.E., Janssen, I.M., Janssen, X., Okely, A., Poitras, V., Rayner, M.E., Reilly, J.J., Rodin, R., Sampson, M., Spencer, J.C., Timmons, B.W., & Welsh, F.

Canadian Institutes of Health Research (CIHR). $100,000. 2016-2017. Update of the Canadian Physical Activity Guidelines for the Early Years. Tremblay, M.S. (PI), Carson, V.L. (PI), Duggan, M. (PI), Adamo, K., Birken, C., Choquette, L., Connor Gorder, S.K., Costas-Bradstreet, C., Faulkner, G., Goldfield, G.S., Gray, C.E., Janssen, I.M., Janssen, X., Okely, A., Poitras, V., Rayner, M.E., Reilly, J.J., Rodin, R., Sampson, M., Spencer, J.C., Timmons, B.W., & Welsh, F.

Canadian Institutes of Health Research (CIHR). $378,427. 2016-2018. An International Study to Develop a Patient-Reported Outcome Instrument for Conditions Associated with a Facial Difference: FACE-Q Kids. Klassen, A. (PI), Wong, K. (co-PI), Pusic, A.

Canadian Institutes of Health Research (CIHR). $9,880. 2016. Evidence and values: what role in health policy to divest from screening? Nicholls, S. (PI), Clifford, T. (co-PI), Little, J. (co-PI), Ashcroft, A., Brehaut, J., Graham, I., Grimshaw, J., Lavis, J., Newson, A., Potter, E., Wilson, M.

Canadian Institutes of Health Research (CIHR). $635,000. 2016-2019. The Family Navigator: A global partnership to expand access to care for autism and related conditions. Elsabbagh, M. (PI), Auger, B. (co-PI), Israel, M. (co-PI), Fleury, M.J., Shikako-Thomas, K., Szatmari, P., Ungar, W., Green, J., Jacquemont, S., Lach, L., Majnemer, A., Mottron, L., & Singh, I.

Canadian Occupational Therapy Foundation, $10,000. 2016 – 2017. Youth Workplace Mental Health: A Northern Focus. Moll, S., Aguiar, K. (Co-PIs), Stergiou-Kita, M., Gewurtz, R., & Missiuna, C.

Central West Community Care Access Centre, $59,913.52. 2016. Development of Proposals and Dissemination of Results of Partnering for Change. Missiuna, C. (PI), Campbell, W., Pollock, N., Camden, C., Bennett, S., Gaines, R., & Cairney, J.

Cerebral Palsy Alliance. $80,000 (AUS). 2016. Successfully negotiating life’s challenges: Learnings from adults with cerebral palsy. Davis, E. (PI), Gaskin, C., Imms, C., Cavalieros, V., Reddihough, D., Msall, M.

Centres de Readaptation en Deficience Intellectuelle et Trouble Envahissant du Developpement (CRDI-TED). $5,000. 2016-2017. When to give a diagnosis of DCD to children already having intellectual disability or autism? Camden, C. (PI), Couture, M., Duguay, J., & Morel, J.

Centre for Leadership in Participation and Inclusion with the support of the Holland Bloorview Kids Rehabilitation Hospital Foundation. $20,000. 2016-2017. Enhancing service provider use of engagement strategies to promote the life skills of youth with disabilities. Keenan, S. (PI), King, G., Cameron, D., McDougall, C., DeFinney, A., Smart, E., McKrone, K., Morris, M., & Hubley, D.

Centre for Leadership in Child Development with the support of the Holland Bloorview Kids Rehabilitation Hospital Foundation. $5,888. 2016-2017. Examining the roles of general pediatricians serving smaller communities in the diagnosis of autism spectrum disorders. Das, J. (PI), Penner, M., King, G., Anagnostou, E., Jones-Stokreef, N., Moore Hepburn, C., & Shouldice, M.

Centre for Leadership in Acquired Brain Injury with the support of the Holland Bloorview Kids Rehabilitation Hospital Foundation. $11,500. 2016-2017. The embodied experience of returning to school following an acquired brain injury: Body mapping with children following brain injury. Hartman, L. (PI), King, G., Mathers, B., Crossman, S., Stahl, K., Anderson, A., & Ryan, L.

Fonds de Recherche du Québec – Société et culture (FRQSC). $212,407. 2016 – 2020. Projet OR: Optimiser les Rôles des acteurs du milieu éducatif pour mieux soutenir les élèves handicapés ou en difficultés d’adaptation ou d’apprentissage. Camden, C. (PI), Anaby, D., Bennett, S., Bonnard, M., Campbell, W., Hui, C., Kalubi, J., Missiuna, C., Morin, M., Nadeau, M., & Shaw, S.

Fonds NutsOhra. 247,420 (EURO). 2016-2017. Participatiematrix. Ketelaar, M. (PI).

Holland Bloorview Kids Rehabilitation Hospital. $23,000. 2016-2017 Evaluation of the reliability and validity of the updated Community Mobility Assessment-2 (CMA-2). Wright, V. (PI), Geisler, T. (co-PI), Brewer, K., Woodhouse, J.

Hospital for Sick Children. $4,835. 2016-2018. Understanding parental behavior related to infant sleep environment. Shouldice, M. (PI), Mahant, S., & Smith, J.

Johanna KinderFonds. 16,000 (EURO). 2016-2017. WWW Wijzer! Ketelaar, M. (PI).

KELA Finland. 118,000 (EURO). 2016-2017. Feasibility Study of a Patient-driven Mobile ICF-based Assessment Tool (mICF). Anttilla, H. (PI), Hiekkala, S., Paltamaa, J., Huotari, J. (co-Is), Kraus de Camargo, O. (collaborator).

McMaster Children’s Hospital & McMaster Children’s Hospital Research Collaborative/Hamilton Health Sciences & Hamilton Health Sciences Foundation/McMaster University. $300,000. 2016-2019. Pediatric Autism Research Collaborative (PARC) Study: Towards an Integrated Model of Autism Research and Clinical Care. Georgiades, S. (PI), Bennett, T. (PI), Roncadin, C. (PI), Di Rezze, B., Rosenbaum, P., Fotheringham-Anderson, C., Kraus de Camargo, O., Mahoney, W., Mesterman, R., Georgiades, K., Meister, C., Eerkes, J., Hoult, L., Robertson, S., Dekker, K., Cauwenbergs, A., Ng, O., & Gentles, S.

Michael Smith Foundation for Health Research. $149,928. 2016-2018. Promoting the Uptake of a Virtual Reality Game for Children with Autism. Jarus, T. (PI), Zwicker, J., Ghanouni, P., Lanphear, N., Roxborough, L., & Sibbet, S.

National Institutes of Health. $172,955 (US). 2016-2018. Colorado Early Intervention Outcomes Research using Innovative Patient-Reported Outcome (PRO) Measures. Khetani, M. (PI), McManus, B. (co-PI), Lindrooth, R.

National Institute for Health Research. £487,670 (BP). 2016-2021. Promoting health and functioning in children with physical limitations through participation in physical activities: the ActiveCHILD study. Kolehmainen, N. (PI).

National Health and Medical Research Council – Centre of Excellence. $2,499,287 (AUS). 2016-2021. Australasian Cerebral Palsy Clinical Trials Network (AusCPCTN): optimising interventions and effective services for children with Cerebral Palsy. Boyd, R., Novak, I., Wallance, E., Badawi, N., Fahey, M., Rose, S., Colditz, P., Ziviani, J., Elliott, C., & Stott, N.

National Health and Medical Research Council – Partnership Grant. $857,941 (AUS). 2016-2018. FitSkills: A community-university partnership to increase participation in exercise among youth with disability. Shields, N. (PI), Taylor, N., Imms, C., Watts, J., Prendergast, L.

National Health and Medical Research Council – Partnership Grant. $2,736,439 (AUS). 2016-2019. Harnessing Neuroplasticity to Improve Motor Performance in Infants with Cerebral Palsy: a Pragmatic Randomized Controlled Trial. Novak, I. (PI).

NeuroDevNet. $5,000. 2016. CP Canada Network – workshop funds. Shikako-Thomas, K. (PI), Majnemer, A., Bushfield, J., & Dorn, J.

Newcastle upon Tyne Hospitals NHS Foundation Trust, Research Capability Funding. £45,848 (BP). 2016-2017. CHILD: Collaborative Health visiting, nursIng, and alLieD health research. Kolehmainen, N. (PI).

Norman Saunders Complex Care Initiative. $8,785. 2016-2017. The Experiences of Bereaved Family Caregivers with Advance Care Planning for Children with Medical Complexity. Orkin, J. (PI), Lord, S. (PI), Amin, R. (PI), Cohen, E., Hellman, J., Rapoport, A., Netten, K.

Norman Saunders Complex Care Initiative. $12,715. 2016-2017. Competence in Complex Care: A Multicenter Randomized Trial of Curricular Modules in the Care of Children with Medical Complexity for Paediatric Residents. Orkin, J. (PI), Huth, K. (PI), Long-Gagne, S. (PI), Cohen, E., Sbrocci, A., Taveres, W.

Norman Saunders Complex Care Initiative $23,649. 2016-2017. Exploring families and health care providers (HCPs) experiences using a cloud-based care plan for children with medical complexity (CMC). Adams, S. (PI), Desai, A. (PI), Cohen, E.

Ontario Child Health Support Unit (OCHSU) and Ontario Neurotrauma Foundation: The IMPACT-Child Health Awards. $329,990. 2016-2019. Pediatric Concussion Assessment of Rest and Exertion (PedCARE): A Randomized Controlled Trial. Zemek, R. (PI), DeMatteo, C. (Co-PI), Reed, N. (Co-PI).

Ontario Mental Health Foundation. $150,000. 2016-2018. Mental Health Outcomes of High-risk Siblings of Children with Autism Spectrum Disorder: From Infancy to School Age. Brian, J. (PI), Zwaigenbaum, L. (co-I).

Ontario Ministry of Children and Youth Services, Enhanced 18-Month Well-Baby Visit Program. $1,448,254. 2016-2017. Toward a System of Early Identification to Optimize Child Development: Developmental Screening and Surveillance in the Early Years – Special Needs Strategy, Developmental Surveillance (Phase 3) and Expansion Project. Cairney, J. (PI), Clinton, J. (PI), Rodriguez, C., Veldhuizen, S., Missiuna, C., Campbell, W., Nair, K., Clark, H., Levinson, A., & Streiner, D.

Ontario Ministry of Children and Youth Services. $15,000. 2016. Developmental trajectories of youth with disabilities: An expanded and refined knowledge synthesis (age 6-25 years). Gorter, J.W. (PI), Stewart, D. (co-PI), Woodbury-Smith, M. (co-PI).

Ontario Ministry of Education and Ontario Ministry of Children and Youth Services $299,931. 2016-2017. Health Professional Online Training: Development of Educational Materials to Facilitate Provision of Integrated Rehabilitation Services. Missiuna, C., Levinson, A.(Co-PIs), Campbell, W., Pollock, N., Gaines, R., Bennett, S., & Hecimovich, C.

Ontario Society of Occupational Therapy Research Fund. $1,000. 2016-2017. Interprofessional education and interprofessional collaborative practice in post-licensure interprofessional settings: A scoping review. Hartman, L. (PI), Schwellnus, H., King, G., & Hubley, D.

Ontario SPOR Support Unit. $300,000. 2016-2018. Comparing the Complex Care for Kids Ontario (CCKO) Province-Wide Integrated Care Intervention for Children with Medical Complexity (CMC) to Waitlist Controls using a Patient-Engaged Evaluation Framework and Mixed Method Design. Fayed, N. (PI), Cohen, E. (co-PI), French, S., Guttman, A., Klassen, A., Kitchen, L., Kolehmainen, N., Moretti, M., Offinga, M., Willan, A., Williams, L., Meloche, J., Wochis, W., Major, N., Orkin, J., & Lim, A.

Perpetual. $600,000 (AUS). 2016. Cord Blood Cells: A Potential Game-Changer for Cerebral Palsy. Novak, I. (PI).

Peter Wall Institute. $50,000. 2016-2017. What’s up? Fostering Communication Skills for Children with Autism using a Virtual Reality Game. Jarus, T. (PI), Zwicker, J., Ghanouni, P., Lanphear, N., Roxborough, L., & Sibbet, S.

Physicians Services Incorporated Foundation. $165,000. 2016-2018. Probiotics for the prevention of antibiotic-induced diarrhea in hospitalized children (PAID). Mahant, S. (PI), Johnston B. (PI), Parkin, P.C., Sherman, P., Maguire, J., Loeb, M., Wahi, G., Guyatt, G.

Reseau Provincial de Recherche en Adaptation-Readaptation (REPAR). $20,000. 2016-2017. Evaluation of the effectiveness of a telehealth rehabilitation intervention for children with DCD to increase their self-efficacy: A pilot clinical trail. Camden, C. (PI), Couture, M., Ducreux, E., Farmer, M., Hurtubise, K., Jasmin, E., Leger, F, Maltais, D., Morin, M., Poder, T., Roberge, P., Tousignant, M., & Zwicker, J.

RevalidatieFonds en CorneliaStichting. 98,000 (EURO). 2016. DJ Fiero en HandsOn doorontwikkeling. Ketelaar, M. (co-I).

Royal Bank of Canada – AlterGO and Canadian Sports for Life. $18,000. 2016-2017. Physical Literacy for Children with Disabilities. Shikako-Thomas, K. (PI).

Social Sciences and Humanities Research Council (SSHRC). $43,726. 2016 – Exploring principal leadership for inclusion of students with special education needs in Canadian schools. Sydor, S. (PI), Maich, K., Specht, J., AcCoin, A., Bennett, S., Loreman, T., MeGie-Richmond, D.

Social Sciences and Humanities Research Council (SSHRC). $3,018. 2016-2017. Developing a resiliency model of community integration and participation following traumatic brain injury. Nalder, E. (PI), King, G., Hartman, L., Hunt, A., Pal, D., Lucas, J., Tang, D., Gregory, S. & St. Jean, S.

Social Sciences and Humanities Research Council of Canada (SSHRC). $58,000. 2016-2018. Across the Great Divide: Challenging the Qualitative-Quantitative Paradigmatic Gap. Parsons, J. (PI), Shaw, J., Thorpe, K., Goldenberg, M., Gibson, B.E., Upshur, R., Cohen, A., Ziegler, C.

Speech-Language-Audiology Canada. $2,500. 2016-2017. SLPs and ECEs collaborating to support all children: A pilot study using universal design for learning. Mander, D. (PI), Moore, N., Gaines, R., Campbell, W.

University of Toronto McLaughlin Centre. $75,000. 2016-2017. An Investigation of Clinically Relevant Genomic Variations in Spastic Diplegic Cerebral Palsy. Fehlings, D. (PI), Wintle R.

US Department of Education. $1,578,509 (US). 2016-2020. Transition outcomes of high-functioning students with autism: How and when students learn the skills necessary for self-management of daily responsibilities. Osmond, G. (PI) & Coster, W. (co-PI).

Infrastructure Funding

John R. Evans Leaders Fund. $80,000. 2016. Infrastructure for physical activity assessment and analysis suite. Canada Foundation for Innovation. Timmons, B.

Ontario Ministry of Research and Innovation. $80,000. 2016. Infrastructure for physical activity assessment and analysis suite. Timmons, B.

Revenue

Since the online Shop’s launch in 2014, there have been steady sales of CanChild measures. Organizations and independent practitioners all over the world have access to 10 CanChild measures through the shop, with 2016’s latest addition, the Partnering for Change (P4C) OT Modules available for purchase. We are actively working to expand the international reach of the Shop, and sales are expected to continue to grow.

As part of the Measurement and Analysis Service (MAS), CanChild has worked closely with the Ontario Ministry of Children and Youth Services and the ABA-based Services and Supports program to complete two full years of evaluation using the Measure of Processes of Care (MPOC). A total of 8,209 responses from families across Ontario have been collected to date. CanChild will continue the evaluation within the ABA program until the end of September 2017 and is exploring options for expanding the Measurement and Analysis Service.

More that $700K in revenue was generated in 2016. Revenue from the CanChild Shop and the Measurement and Analysis Service is reinvested into research and knowledge translation activities to improve the lives of children and youth with disabilities and their families.

Engagement

Percentage increase in Facebook likes, unique website visitors, and Twitter followers.

CanChild uses several different methods to engage with our various knowledge users. In 2016, CanChild had:

208,688 unique visitors to the CanChild website from 179 countries
3,562 subscribers to the CanChild Newsletter
3,221 followers on Facebook
2,590 followers on Twitter
130 members in our Parents Participating in Research closed Facebook group

Connect with us!

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International Reach

Website visits

Invited & Keynote Presentations

The Centre

Founded in 1989 at McMaster University, CanChild is a world leader in the field of childhood disability. Below we have highlighted our team and celebrate some of our successes over 2016!

News and Accomplishments

Selected News & Accomplishments

Dr. Mary Law (McMaster University)
Inducted into the Faculty of Health Sciences, Community of Distinction at McMaster University. This is the most prestigious award through the Faculty.

Prof. Deb Stewart (McMaster University)
Recipient of the Honourary Life Membership Award through the Ontario Society of Occupational Therapists. This award recognizes her outstanding contributions to the field.

Dr. Darcy Fehlings (Holland Bloorview Kids Rehabilitation Hospital)
Dr. Fehlings and colleagues were awarded the Evidence to Care: Knowledge Translation Champion Award through Holland Bloorview Holland Rehabilitation Hospital. This award is in recognition of their work “Hip Surveillance in Cerebral Palsy: Developing a Care Pathway”.

Dr. Chantal Camden (University of Sherbrooke)
Received a four-year salary award from the Fonds de Recherche du Québec – Santé (FRQS)

Dr. Christine Imms (Australian Catholic University)
Presented the Dinah Reddihough Oration at the Australasian Academy of Cerebral Palsy & Developmental Medicine. Her talk was titled “A centre of research excellence: aspiration, innovation and participation in cerebral palsy.”

Tram Nguyen (PhD Student, McMaster University)
Received a 3 year CIHR Postdoctoral Fellowship Award – Frederick Banting and Charles Best Canada. This award allows Tram to further her training and expertise in Knowledge Translation under the supervision of Dr. Ian Graham at the University of Ottawa.

Dr. Barbara Gibson (University of Toronto)
Inducted into the College of New Scholars, Artists and Scientists of The Royal Society of Canada.

Julia Hanes (Student Research Assistant, McMaster University)
Selected as the recipient of the 2016 Dr. Graham Chance Award, the award is given by the Canadian Institute of Child Health (CICH). This award is presented to a young person (<30 years of age) who has “demonstrated leadership in promoting or protecting the health and well-being of children and/or youth in Canada.”

Patrick McPhee (PhD Student, McMaster University)
Received a CIHR Travel Award to allow him to present his work on the risk of long-term disease for people with CP.

Prof. Carol DeMatteo (McMaster University)
Invited as an expert consultant for the Rowan’s Law Committee. Rowan’s Law was named after Rowan Stringer, an Ottawa teenager who passed away in 2013 after suffering multiple concussions. A coroner’s inquest into Rowan’s death resulted in 49 recommendations around brain injury awareness and prevention. Rowan’s Law Advisory Committee Act (Bill 149) was passed in 2016.

Drs. Peter Rosenbaum and Gabriel Ronen (McMaster University)
Along with colleagues Drs. Eric Racine, Jennifer Johannesen and Bernard Dan, are authors and editors of a new book “Ethics in Child Health: Principles and Cases in Neurodisability.”

Dr. Mary Khetani (Colorado State University)
First author of a supplemental measure selected for inclusion in the NIH/NINDS Common Data Elements Initiative, 2016

Scientists

CanChild Scientists


DIRECTOR Jan Willem Gorter (McMaster University) CO-FOUNDERS Mary Law (McMaster University) Peter Rosenbaum (McMaster University) SCIENTISTS Doreen Bartlett (Western University) John Cairney (McMaster University) Wenonah Campbell (McMaster University) Eyal Cohen (University of Toronto) Carol DeMatteo (McMaster University) Briano Di Rezze (McMaster University) Mark Ferro (McMaster University) Steven Hanna (McMaster University) Marilyn Kertoy (Western University) Anne Klassen (McMaster University) Danielle Levac (Northeastern University) Cheryl Missiuna (McMaster University) Robert Palisano (Drexel University) Nancy Pollock (McMaster University) Dianne Russell (McMaster University) Debra Stewart (McMaster University) Brian Timmons (McMaster University) Stephen Walter (McMaster University) Virginia Wright (Bloorview Research Institute)	RESEARCH ASSOCIATES Khush Amaria (Hospital for Sick Children) Dana Anaby (McGill University) Sheila Bennett (Brock University) Jamie Brehaut (University of Ottawa) Jan Burke-Gaffney (Parent Advocate) Chantal Camden (Sherbrooke University) Nora Fayed (Queen’s University) Darcy Fehlings (University of Toronto) Robin Gaines (Children’s Hospital of Eastern Ontario) Barbara Gibson (University of Toronto) Sandy Hodgetts (University of Alberta) Gillian King (Bloorview Research Institute) Dafna Kohen (Statistics Canada) Olaf Kraus de Camargo (McMaster University) Lucyna Lach (McGill University) Sanjay Mahant (Hospital for Sick Kids) Ronit Mesterman (McMaster University) Gabriel Ronen (McMaster University) Keiko Shikako-Thomas (McGill University) Nancy Thomas-Stonell (Bloorview Research Institute) Lonnie Zwaigenbaum (University of Alberta) Jill Zwicker (University of British Columbia)	INTERNATIONAL COLLABORATORS Gary Bedell (Tufts University) Lisa Chiarello (Drexel University) Wendy Coster (Boston University) Alyssa LaForme Fiss (Mercer University) Adrienne Harvey (Royal Children’s Hospital) Christine Imms (Australian Catholic University) Lynn Jeffries (University of Oklahoma) Marian Jongmans (Utrecht University) Marjolijn Ketelaar (University Medical Center Utrecht) Mary Khetani (Colorado State University) Niina Kolehmainen (Newcastle University) Lena Krumlinde Sundholme (Karolinska Institutet) Livia Malgalhaes (Federal University of Mina Gerais) Sarah Westcott McCoy (University of Washington) Chris Morris (Peninsula Cerebra Research Unit) Eva Nordmark (Lund University) Iona Novak (University Notre Dame) Barbara Piskur (Zuyd University) Olaf Verschuren (Rehabilitation Centre de Hoogstraat)

DIRECTOR

Jan Willem Gorter (McMaster University)

CO-FOUNDERS

Mary Law (McMaster University)
Peter Rosenbaum (McMaster University)

SCIENTISTS

Doreen Bartlett (Western University)
John Cairney (McMaster University)
Wenonah Campbell (McMaster University)
Eyal Cohen (University of Toronto)
Carol DeMatteo (McMaster University)
Briano Di Rezze (McMaster University)
Mark Ferro (McMaster University)
Steven Hanna (McMaster University)
Marilyn Kertoy (Western University)
Anne Klassen (McMaster University)
Danielle Levac (Northeastern University)
Cheryl Missiuna (McMaster University)
Robert Palisano (Drexel University)
Nancy Pollock (McMaster University)
Dianne Russell (McMaster University)
Debra Stewart (McMaster University)
Brian Timmons (McMaster University)
Stephen Walter (McMaster University)
Virginia Wright (Bloorview Research Institute)

RESEARCH ASSOCIATES

Khush Amaria (Hospital for Sick Children)
Dana Anaby (McGill University)
Sheila Bennett (Brock University)
Jamie Brehaut (University of Ottawa)
Jan Burke-Gaffney (Parent Advocate)
Chantal Camden (Sherbrooke University)
Nora Fayed (Queen’s University)
Darcy Fehlings (University of Toronto)
Robin Gaines (Children’s Hospital of Eastern Ontario)
Barbara Gibson (University of Toronto)
Sandy Hodgetts (University of Alberta)
Gillian King (Bloorview Research Institute)
Dafna Kohen (Statistics Canada)
Olaf Kraus de Camargo (McMaster University)
Lucyna Lach (McGill University)
Sanjay Mahant (Hospital for Sick Kids)
Ronit Mesterman (McMaster University)
Gabriel Ronen (McMaster University)
Keiko Shikako-Thomas (McGill University)
Nancy Thomas-Stonell (Bloorview Research Institute)
Lonnie Zwaigenbaum (University of Alberta)
Jill Zwicker (University of British Columbia)

INTERNATIONAL COLLABORATORS

Gary Bedell (Tufts University)
Lisa Chiarello (Drexel University)
Wendy Coster (Boston University)
Alyssa LaForme Fiss (Mercer University)
Adrienne Harvey (Royal Children’s Hospital)
Christine Imms (Australian Catholic University)
Lynn Jeffries (University of Oklahoma)
Marian Jongmans (Utrecht University)
Marjolijn Ketelaar (University Medical Center Utrecht)
Mary Khetani (Colorado State University)
Niina Kolehmainen (Newcastle University)
Lena Krumlinde Sundholme (Karolinska Institutet)
Livia Malgalhaes (Federal University of Mina Gerais)
Sarah Westcott McCoy (University of Washington)
Chris Morris (Peninsula Cerebra Research Unit)
Eva Nordmark (Lund University)
Iona Novak (University Notre Dame)
Barbara Piskur (Zuyd University)
Olaf Verschuren (Rehabilitation Centre de Hoogstraat)

Research/KT Support

Research & KT Support


CANCHILD COORDINATORS Brie Chauncey, Communications Coordinator Taya John, Administrative Support Dayle McCauley (mat leave), Research Development Officer Nathan Nash (until Oct 2016), Business Development Officer Marlice Simon, Administrative Support (Gorter/Rosenbaum) Sonya Strohm, Research Development Officer Rachel Teplicky, Business and Engagement Officer	RESEARCH COORDINATORS / ASSISTANTS Brie Chauncey, CP-NET KT project Andrea Cross, Family Engagement Cindy DeCola, P4C project Leah Dix, P4C project Barb Galuppi, On-TRACK project Oksana Hlyva, Lifecourse project Sarah Hopmans, CP-NET projects Rachael Leighfield, Back to Play project Chia-Yu Lin, mTBI projects Nadilein Mahlberg, Epilepsy projects Sonya Strohm, CHILD-BRIGHT/GMFM app projects Helena Viveiros, Autism projects	STUDENT RESEARCH ASSISTANTS Vivian Au Samantha Aung Isabel Contin Roman Gulko Julia Hanes Riaz Panjwani Yash Patel Kaiwen Song Chloe Wong Samuel Wu Eliya Zhao

CANCHILD COORDINATORS

Brie Chauncey, Communications Coordinator
Taya John, Administrative Support
Dayle McCauley (mat leave), Research Development Officer
Nathan Nash (until Oct 2016), Business Development Officer
Marlice Simon, Administrative Support (Gorter/Rosenbaum)
Sonya Strohm, Research Development Officer
Rachel Teplicky, Business and Engagement Officer

RESEARCH COORDINATORS / ASSISTANTS

Brie Chauncey, CP-NET KT project
Andrea Cross, Family Engagement
Cindy DeCola, P4C project
Leah Dix, P4C project
Barb Galuppi, On-TRACK project
Oksana Hlyva, Lifecourse project
Sarah Hopmans, CP-NET projects
Rachael Leighfield, Back to Play project
Chia-Yu Lin, mTBI projects
Nadilein Mahlberg, Epilepsy projects
Sonya Strohm, CHILD-BRIGHT/GMFM app projects
Helena Viveiros, Autism projects

STUDENT RESEARCH ASSISTANTS

Vivian Au
Samantha Aung
Isabel Contin
Roman Gulko
Julia Hanes
Riaz Panjwani
Yash Patel
Kaiwen Song
Chloe Wong
Samuel Wu
Eliya Zhao

Trainees

Trainees (McMaster University)


POST-DOCTORAL FELLOWS Stephen Gentles Diana Parvinchi Lisa Rivard	PHD STUDENTS Denver Brown (Supervised by Dr. Gabriel Ronen) Fiona Campbell (Supervised by Dr. Cheryl Missiuna) Andrea Cross (Supervised by Dr. Peter Rosenbaum) BJ Cunningham (Supervised by Dr. Peter Rosenbaum) Matt Freeman (Supervised by Dr. Jan Willem Gorter) Pranay Jindal (Supervised by Dr. Joy MacDermid) Jennifer Kennedy (Supervised by Dr. Cheryl Missiuna) Ghaidaa Khalifa (Supervised by Dr. Briano DiRezze) Patrick McPhee (Supervised by Dr. Jan Willem Gorter) Tram Nguyen (Supervised by Dr. Jan Willem Gorter)* Monika Novak (Supervised by Dr. Peter Rosenbaum) Michelle Phoenix (Supervised by Dr. Peter Rosenbaum) Enid Selkirk (Supervised by Dr. Cheryl Missiuna) Elena Tsangaris (Supervised by Dr. Anne Klassen) Uzma Williams (Supervised by Dr. Mary Law)* Kathy Wlodarczyk (Supervised by Dr. Cheryl Missiuna)

POST-DOCTORAL FELLOWS

Stephen Gentles
Diana Parvinchi
Lisa Rivard

PHD STUDENTS

Denver Brown (Supervised by Dr. Gabriel Ronen)
Fiona Campbell (Supervised by Dr. Cheryl Missiuna)
Andrea Cross (Supervised by Dr. Peter Rosenbaum)
BJ Cunningham (Supervised by Dr. Peter Rosenbaum)
Matt Freeman (Supervised by Dr. Jan Willem Gorter)
Pranay Jindal (Supervised by Dr. Joy MacDermid)
Jennifer Kennedy (Supervised by Dr. Cheryl Missiuna)
Ghaidaa Khalifa (Supervised by Dr. Briano DiRezze)
Patrick McPhee (Supervised by Dr. Jan Willem Gorter)
Tram Nguyen (Supervised by Dr. Jan Willem Gorter)*
Monika Novak (Supervised by Dr. Peter Rosenbaum)
Michelle Phoenix (Supervised by Dr. Peter Rosenbaum)
Enid Selkirk (Supervised by Dr. Cheryl Missiuna)
Elena Tsangaris (Supervised by Dr. Anne Klassen)
Uzma Williams (Supervised by Dr. Mary Law)*
Kathy Wlodarczyk (Supervised by Dr. Cheryl Missiuna)

*Completed program in 2016

Advisory Board

Advisory Board Members


Ian Buchanan Jennifer Crowson Susanne Flett Jonathan Lu David Mosher Frank Naus Peter Rosenbaum

Scientific Advisory

Scientific Advisory Board

Jan Willem Gorter, Director
Mary Law, Co-founder
Peter Rosenbaum, Co-founder
Cheryl Missiuna, Scientist
Steve Hanna, Scientist
John Cairney, Scientist
Dayle McCauley (mat leave), Research Development Officer

Collaborators

Collaborators

CanChild proudly collaborates with the following key partners to generate knowledge and transform lives:

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