“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
Understanding the risk factors, neurological mechanisms, and neurodevelopmental and psychosocial impacts of CP is
essential to developing treatments to improve the lives of individuals with CP and their families.
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.
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.
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.
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:
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.
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 relationshipsestablished 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.