Clinical trial NCT03353194: Canadian CP Registry - Registre Canadien de la Paralysie Cérébrale
Official title: The Canadian Cerebral Palsy Registry - Le Registre Canadien de la Paralysie Cérébrale
Study type: OBSERVATIONAL
Overall status: COMPLETED
Conditions: Cerebral Palsy
Keywords: Cerebral Palsy
Canada
Registry
Lead sponsor: McGill University Health Centre/Research Institute of the McGill University Health Centre
Sponsor class: OTHER
Collaborators: name: Kids Brain Health Network
name: Children's Treatment Network
name: Montreal Children's Hospital of the MUHC
name: Alberta Children's Hospital
name: Women and Children's Health Research Institute, Canada
name: Provincial Health Services Authority
name: IWK Health Centre
name: The Hospital for Sick Children
name: Holland Bloorview Kids Rehabilitation Hospital
First posted: 2017-11-27
Enrollment: 2771
Sex: ALL
Minimum age (years): 18
Maximum age (years): 18
Standard ages: CHILD
ADULT
Accepts healthy volunteers: no
Observational model: OTHER
Time perspective: PROSPECTIVE
Sampling method: PROBABILITY_SAMPLE
Study population: Children living with a diagnosis of Cerebral Palsy in Canada.

Brief 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.

Detailed 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

Eligibility criteria: Inclusion Criteria:

* Under 18 (age cut-off varies by region)
* Diagnosed with Cerebral Palsy
* Living in Canada

Exclusion Criteria:

* Uncertain CP diagnosis

Primary outcomes:
measure: Characterize the CP profile across Canada
timeFrame: An average of every two years, up to study completion or ten years, whichever comes first.
Secondary outcomes:
Other outcomes:
Locations:
city: Calgary
country: Canada
facility: Alberta Children's Hospital
state: Alberta
city: Edmonton
country: Canada
facility: Glenrose Rehabilitation Hospital
state: Alberta
city: Vancouver
country: Canada
facility: Sunny Hill Health Centre for Children
state: British Columbia
city: St. John's
country: Canada
facility: Janeway Health Center
state: Newfoundland & Labrador
city: Halifax
country: Canada
facility: IWK Health Centre
state: Nova Scotia
city: Barrie
country: Canada
facility: Children's Treatment Network
state: Ontario
city: Toronto
country: Canada
facility: Holland-Bloorview Kids Rehabilitation Hospital
state: Ontario
city: Gatineau
country: Canada
facility: Centre régional de réadaptation La RessourSe
state: Quebec
city: Joliette
country: Canada
facility: Centre de réadaptation Le Bouclier
state: Quebec
city: Montréal
country: Canada
facility: Centre de Réadaptation Marie-Enfant
state: Quebec
city: Montréal
country: Canada
facility: MAB-Mackay Rehabilitation Centre
state: Quebec
city: Montréal
country: Canada
facility: Montreal Children's Hospital
state: Quebec
city: Montréal
country: Canada
facility: Shriners Hospital Montreal
state: Quebec
city: Quebec City
country: Canada
facility: Institut de réadaptation physique du Québec
state: Quebec
city: Sherbrooke
country: Canada
facility: Centre de réadaptation Estrie
state: Quebec
Study officials:
affiliation: McGill University Health Centre/Research Institute of the McGill University Health Centre
name: Michael I Shevell, MDCM
role: PRINCIPAL_INVESTIGATOR
affiliation: McGill University Health Centre/Research Institute of the McGill University Health Centre
name: Maryam Oskoui, MD, MSc
role: PRINCIPAL_INVESTIGATOR
References:
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. Nat Commun. 2015 Aug 3;6:7949. doi: 10.1038/ncomms8949.
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.
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. No abstract available.
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.
citation: 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.
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.