Project Description

Challenge

While cerebral palsy is the most common physical impairment in pediatrics, there is a lack of data on how the disease presents in children at the population level. Do regional differences exist across the frequency and spectrum of cerebral palsy within Canada? How does the Canadian experience  compare internationally ? What can a population derived sample inform us about the phenotype of cerebral palsy and its determinants ? What is the possible role of genetics in Cerebral Palsy?

Project Summary

The first of its kind in North America, the Canadian Cerebral Palsy Registry, has been established to understand better the type, severity, possible causes and co-morbidities of Cerebral Palsy across Canada and to identify potential risk factors.

The Registry is a confidential, nation-wide collection of medical and demographic information about children with cerebral palsy collected systematically. It began as a regional registry established by clinicians, investigators and parents in Quebec, and in 2011 was expanded to the GTA and Northern Alberta. In subsequent years the Registry has also been established in Newfoundland, Nova Scotia, Ontario, and British Columbia. The Registry has continued to grow, and currently covers the spectrum of the Canadian population, drawing from a population base of 18 million and roughly 180,000 annual births to collect over 2,000 registrants since inception.

Result

There is now enough information in the Registry to enable researchers to look into regional differences , phenotypic variation and its determinants and to act as a platform for recruitment for new research initiatives. The registry group works closely with similar Cerebral Palsy registries in Europe and in Australia to compare results and best practices. The team recently launched a Genetics of Cerebral Palsy study, examining the role of genetics in Cerebral Palsy and exploring linkages with other neurodisabilities.

Team

Investigators

Michael Shevell, McGill University
Darcy Fehlings, University of Toronto
John Andersen, University of Alberta
Maryam Oskoui, McGill University
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

Subsequent Cycle II Initiatives

Canadian Cerebral Palsy (CP) Registry
Expansion of the Canadian Cerebral Palsy Registry