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.
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.
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:
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.
Photo courtesy of Julie Brocklehurst.