Project Description
Challenge
There has historically been a lack of population-based information on how cerebral palsy presents in children, including possible risk factors, antecedent causes, functional severity, and co-morbidities of the condition. To better understand the condition, the Canadian Cerebral Palsy Registry was created in Cycle I.
Project Summary
The Registry is a confidential, nation-wide collection of medical and social information about children with cerebral palsy and is the first of its kind in North America. It draws from a population base of 18 million and 180,000 annual births. By the end of Cycle II, there were over 2000 participants across Canada. Information from these samples formed the basis of multiple studies and impactful publications.
Result
The first was the Genetics of CP study, in which researchers examined via microarray study possible genetic roles in CP. The research also led to membership in the International Cerebral Palsy Genomics Consortium and provided a platform for investigating genomics in CP through whole exome sampling of both unselected cases and examples of ‘atypical’ CP.
Researchers also collaborated on a study of sleep disturbances in children with CP, the results of which were presented at the American Academy for Cerebral Palsy & Developmental Medicine. The study found that sleep disorders are prevalent in children with CP, resulted in daytime behavioural challenges, and were strongly related to pain.
Data from the Registry has also led to the publication of papers, mainly focusing on socioeconomic and regional factors in CP outcomes. Research on the prevalence and characteristics of CP in Northern Alberta, an analysis of the accuracy of administrative data for CP in Québec, distinctive phenotypes of CP, natural history, and the links between CP and maternal age were all published.
The success of the Registry led to the funding of the Integrative Canadian Neurodiversity platform (iCAN). This platform will streamline data collection to increase the potential for international data sharing across neurodevelopmental disabilities subtypes, and new database creation.
Funding
This subproject was part of the larger “Cerebral Palsy Discovery Program.” The CP program was funded a total of $1,281,909 from the Kids Brain Health Network and $2,296,662 from participating partners.
Team
Dr. Michael Shevell, McGill University
Dr. Maryam Oskoui, McGill University
David Buckey, Memorial University
Ellen Wood, Dalhousie University
Darcy Fehlings, University of Toronto
Adam Kirton, University of Calgary
John Andersen, University of Alberta
Esias van Rensburg, University of British Columbia
Annette Majnemer, McGill University
Partners
Mcgill University
Mcgill University Health Centre
Montreal Children’s Hospital Foundation
Glenrose Rehabilitation Hospital
Alberta Children’s Hospital
Sunny Hill Health Centre for Children
BC Children’s Hospital
Janeway Health Center
IWK Health Centre
Holland-Bloorview Kids Rehabilitation Hospital
Institut de réadaptation en déficience physique de Québec
Centre de réadaptation Estrie
Centre de Réadaptation Marie-Enfant
Centre MAB-Mackay
Shriners Hospital Montreal
Montreal Children’s Hospital
Centre de réadaptation Le Bouclier
Previous Cycle I Initiatives
The Canadian Cerebral Palsy Registry
