Pan-Canadian Cerebral Palsy Registry website launches
NeuroDevNet’s website is home to the web-based interface for the Canadian Cerebral Palsy Registry. Launched in March 2011, the Registry is a confidential, nation-wide collection of medical and social data about children with cerebral palsy. With roots in Quebec, the Registry has expanded nationwide to include participants in British Columbia, Alberta, Ontario, Nova Scotia and Newfoundland.
The first of its kind in North America, the Registry currently holds data on about 1400 children across Canada. The information collected “provides an important means for accurately ascertaining the profile of this most common childhood physical disability in Canada,” says Lead Investigator Dr. Michael Shevell.
The three main goals of the Registry are to:
1. Gain further understanding of the risk factors and causes of Cerebral Palsy
2. Understand how often children are diagnosed with CP and where they live in Canada
3. Better understand parents’ perspectives on their child’s care and services provided to them
The Registry “will further our understanding of the causes of CP and its functional implications,” adds Dr. Shevell. “This knowledge will provide the basis for possible prevention strategies as well as improvements in services delivered to children with CP and their families.”
The registry plays a key role in recruitment of participants for research on cerebral palsy in children, he said.
Interested in learning more?
Visit our new Registry website for more details on registration, participating centres, data confidentiality, and more.
The Canadian Cerebral Palsy Registry is part of the NeuroDevNet Cerebral Palsy Demonstration Project and funded by NeuroDevNet, Public Health Agency of Canada, and Neurological Health Charities Canada.
Aussi disponible en français: http://neurodevnet.ca/fr/cp-registry
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Research Associate - Health Policy, School of Public Policy at the University of Calgary