Project Description
Challenge
The Canadian Cerebral Palsy Registry initially launched in 2003 as a platform to store data from people diagnosed with cerebral palsy (CP). It has since expanded to include more than 2,250 participants with the disorder and has resulted in more than 35 academic publications.
The next phase of the project is looking to expand the Registry into the Integrative Canadian Neurodiversity Platform (iCAN), also known as Registry 2.0. The project was led by Dr. Maryam Oskoui (McGill University) to evolve the Registry into a platform that collects more extensive data, which is easy to both share and access.
Project Summary
Since its launch 10+ years ago, new and exciting research questions about CP have emerged. For example, the role of genetics and its overlap with other neurodevelopmental disorders, which aren’t being captured by the current Registry. Registry 2.0 will update the variables captured and organize this information in a way that aligns with other biological databases. This way, researchers will be able to broaden the types of questions they can ask of the data.
A second objective is making the Registry easier for families to access. The new platform will be available online so that families can self-register and independently input their information. These features will save time and allow more people to be involved. Families will have the opportunity to sign up for newsletters and help prioritize research efforts as a way to ensure they are benefiting from and contributing to the Registry.
Result
The team is also piloting the possibility of Registry 2.0 containing similar data on other brain-based disabilities, including Intellectual Disability (ID) and Developmental Coordination Disorder (DCD). This Registry will allow for data sharing across neurodevelopmental disabilities (NDD) and will place Canada as a leader in NDD research.
Funding
Kids Brain Health Network – $200,000
Partners – $153,585
Team
Principal Investigator
Maryam Oskoui, McGill University
Co-Investigators
John Andersen, University of Alberta
Michael Shevell, McGill University
Francois Bolduc, University of Alberta
Denise Keiko Shikako-Thomas, McGill University
Darcy Fehlings, Holland Bloorview Kids Rehabilitation Hospital
Jill Zwicker, University of British Columbia
Partners
Australia CP Alliance
Norwegian University of Science and Technology
Child-BRIGHT
Childhood Disability LINK
Previous Cycle I Initiatives
The Canadian Cerebral Palsy Registry
