The implementation of a Cerebral Palsy Registry in the province of Québec, Canada

Chercheurs: L Koclas(a) MD, C Lamarre(b) MD, L Dagenais(a) PT, M Shevell (a) MD
(a) McGill University, Montreal, Canada
(b) Université de Montréal, Montreal, Canada

Objectives:
The implementation of a cerebral Palsy (CP) Registry in the province of Quebec will serve many objectives. With this registry we will be able to estimate the prevalence and distribution of CP in Quebec, Canada. Risk factors for CP will be identified. Research in this field will be facilitated. We will also document the functional status of children with CP. We anticipate that a registry may improve the quality of care and the quality of life for children with CP and their families.

Methods:
A working group of clinicians and researchers was instituted in 1998. A Delphi consensus was obtained for definition, classification and risk factors for CP. To measure the severity of CP, the Gross Motor Function Classification System for Cerebral Palsy (GMFCS) classification is used. A pilot project was started in February 2005. Limited inscriptions of patients from the rehabilitation centres started one year later. All the collected data is transmitted via Internet to an electronic data management firm via secure connection.

Results:
To date, 166 children born between January 15, 1999 and December 31, 2001 were registered in 6 of the 18 regions in Quebec.