Canadian CP Registry - Registre Canadien de la Paralysie Cérébrale

Cerebral Palsy Clinical Trial

Official title:

The Canadian Cerebral Palsy Registry - Le Registre Canadien de la Paralysie Cérébrale

Clinical Trial Details — Status: Completed

Administrative data

• NCT number: NCT03353194
• Other study ID #: 09-234-PED
• Status: Completed
• Start date: April 14, 2004
• Est. completion date: April 2020

Study information

• Verified date: February 2021
• Source: McGill University Health Centre/Research Institute of the McGill University Health Centre
• Contact: n/a
• Is FDA regulated: No
• Study type: Observational [Patient Registry]

Clinical Trial Summary

The Canadian Cerebral Palsy (CP) Registry is a confidential, nation-wide collection of medical and social information about children with cerebral palsy. The Registry was first implemented in 2003 in 6 administrative regions of Quebec and was later extended to paediatric centres in Newfoundland, Nova Scotia, Ontario, Alberta, and British Columbia. Over 1850 children living with Cerebral Palsy have been registered so far. The Registry is the first national registry for cerebral palsy in North America.

Description:

The Canadian Cerebral Palsy Registry is a multi-regional Canadian registry to identify potential risk factors related to pregnancy and interactions of the environment and genetics. The Registry provides researchers with the approximate number of children with cerebral palsy across Canada, and data in the Registry helps researchers explore reasons behind the causes of cerebral palsy, in addition to supporting studies which may lead to improvements in the overall care of children with CP.

Cerebral palsy is the most common cause of physical disability in children in Canada and it is important that we gain a better understanding of its prevalence, risk factors and current clinical profile. The Canadian CP Registry provides valuable data from different Canadian regions which can be shared and analyzed so as to provide answers to these important questions. Specifically, the Registry serves to:

• Characterize the profile of children living with CP across the country

• Identify risk factors associated with CP

• Monitor the prevalence of CP across the country

• Provide a platform for subject recruitment for population-based research on CP

Recruitment information / eligibility

• Status: Completed
• Enrollment: 2771
• Est. completion date: April 2020
• Est. primary completion date: April 2020
• Accepts healthy volunteers: No
• Gender: All
• Age group: 18 Months to 18 Years

Eligibility

Inclusion Criteria:

• Under 18 (age cut-off varies by region)

• Diagnosed with Cerebral Palsy

• Living in Canada

Exclusion Criteria:

• Uncertain CP diagnosis

Related Conditions & MeSH terms

• Cerebral Palsy

Locations

Country	Name	City	State
Canada	Children's Treatment Network	Barrie	Ontario
Canada	Alberta Children's Hospital	Calgary	Alberta
Canada	Glenrose Rehabilitation Hospital	Edmonton	Alberta
Canada	Centre régional de réadaptation La RessourSe	Gatineau	Quebec
Canada	IWK Health Centre	Halifax	Nova Scotia
Canada	Centre de réadaptation Le Bouclier	Joliette	Quebec
Canada	Centre de Réadaptation Marie-Enfant	Montréal	Quebec
Canada	MAB-Mackay Rehabilitation Centre	Montréal	Quebec
Canada	Montreal Children's Hospital	Montréal	Quebec
Canada	Shriners Hospital Montreal	Montréal	Quebec
Canada	Institut de réadaptation physique du Québec	Quebec City	Quebec
Canada	Centre de réadaptation Estrie	Sherbrooke	Quebec
Canada	Janeway Health Center	St. John's	Newfoundland & Labrador
Canada	Holland-Bloorview Kids Rehabilitation Hospital	Toronto	Ontario
Canada	Sunny Hill Health Centre for Children	Vancouver	British Columbia

Sponsors (10)

Lead Sponsor	Collaborator
McGill University Health Centre/Research Institute of the McGill University Health Centre	Alberta Children's Hospital, Children's Treatment Network, Holland Bloorview Kids Rehabilitation Hospital, IWK Health Centre, Kids Brain Health Network, Montreal Children's Hospital of the MUHC, Provincial Health Services Authority, The Hospital for Sick Children, Women and Children's Health Research Institute, Canada

Country where clinical trial is conducted

Canada, 

References & Publications (6)

Garfinkle J, Wintermark P, Shevell MI, Oskoui M. Children born at 32 to 35 weeks with birth asphyxia and later cerebral palsy are different from those born after 35 weeks. J Perinatol. 2017 Aug;37(8):963-968. doi: 10.1038/jp.2017.23. Epub 2017 Mar 16. — View Citation

Oskoui M, Gazzellone MJ, Thiruvahindrapuram B, Zarrei M, Andersen J, Wei J, Wang Z, Wintle RF, Marshall CR, Cohn RD, Weksberg R, Stavropoulos DJ, Fehlings D, Shevell MI, Scherer SW. Clinically relevant copy number variations detected in cerebral palsy. Na — View Citation

Oskoui M, Joseph L, Dagenais L, Shevell M. Prevalence of cerebral palsy in Quebec: alternative approaches. Neuroepidemiology. 2013;40(4):264-8. doi: 10.1159/000345120. Epub 2013 Jan 24. — View Citation

Oskoui M, Majnemer A, Dagenais L, Shevell MI. The relationship between gross motor function and manual ability in cerebral palsy. J Child Neurol. 2013 Dec;28(12):1646-52. doi: 10.1177/0883073812463608. Epub 2012 Oct 30. — View Citation

Oskoui M, Messerlian C, Blair A, Gamache P, Shevell M. Variation in cerebral palsy profile by socio-economic status. Dev Med Child Neurol. 2016 Feb;58(2):160-6. doi: 10.1111/dmcn.12808. Epub 2015 May 22. — View Citation

Shevell M, Dagenais L, Oskoui M. The epidemiology of cerebral palsy: new perspectives from a Canadian registry. Semin Pediatr Neurol. 2013 Jun;20(2):60-4. doi: 10.1016/j.spen.2013.06.008. Review. — View Citation

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	Characterize the CP profile across Canada	CP subtype, severity, and associated conditions	An average of every two years, up to study completion or ten years, whichever comes first.

External Links

•   Official site of the Canadian Cerebral Palsy Registry