Canadian CP Registry - Registre Canadien de la Paralysie Cérébrale

NCT ID: NCT03353194

Last Updated: 2021-02-25

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

2771 participants

Study Classification

OBSERVATIONAL

Study Start Date

2004-04-14

Study Completion Date

2020-04-30

Brief Summary

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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

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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

Conditions

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Cerebral Palsy

Study Design

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Observational Model Type

OTHER

Study Time Perspective

PROSPECTIVE

Eligibility Criteria

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Inclusion Criteria

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

Exclusion Criteria

* Uncertain CP diagnosis
Minimum Eligible Age

18 Months

Maximum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Kids Brain Health Network

UNKNOWN

Sponsor Role collaborator

Children's Treatment Network

NETWORK

Sponsor Role collaborator

Montreal Children's Hospital of the MUHC

OTHER

Sponsor Role collaborator

Alberta Children's Hospital

OTHER

Sponsor Role collaborator

Women and Children's Health Research Institute, Canada

OTHER

Sponsor Role collaborator

Provincial Health Services Authority

OTHER

Sponsor Role collaborator

IWK Health Centre

OTHER

Sponsor Role collaborator

The Hospital for Sick Children

OTHER

Sponsor Role collaborator

Holland Bloorview Kids Rehabilitation Hospital

OTHER

Sponsor Role collaborator

McGill University Health Centre/Research Institute of the McGill University Health Centre

OTHER

Sponsor Role lead

Responsible Party

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Maryam Oskoui, MD, MSc, FRCPC, FAAN

Associate Professor, Departments of Pediatrics and Neurology & Neurosurgery

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Michael I Shevell, MDCM

Role: PRINCIPAL_INVESTIGATOR

McGill University Health Centre/Research Institute of the McGill University Health Centre

Maryam Oskoui, MD, MSc

Role: PRINCIPAL_INVESTIGATOR

McGill University Health Centre/Research Institute of the McGill University Health Centre

Locations

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Alberta Children's Hospital

Calgary, Alberta, Canada

Site Status

Glenrose Rehabilitation Hospital

Edmonton, Alberta, Canada

Site Status

Sunny Hill Health Centre for Children

Vancouver, British Columbia, Canada

Site Status

Janeway Health Center

St. John's, Newfoundland and Labrador, Canada

Site Status

IWK Health Centre

Halifax, Nova Scotia, Canada

Site Status

Children's Treatment Network

Barrie, Ontario, Canada

Site Status

Holland-Bloorview Kids Rehabilitation Hospital

Toronto, Ontario, Canada

Site Status

Centre régional de réadaptation La RessourSe

Gatineau, Quebec, Canada

Site Status

Centre de réadaptation Le Bouclier

Joliette, Quebec, Canada

Site Status

Centre de Réadaptation Marie-Enfant

Montreal, Quebec, Canada

Site Status

MAB-Mackay Rehabilitation Centre

Montreal, Quebec, Canada

Site Status

Montreal Children's Hospital

Montreal, Quebec, Canada

Site Status

Shriners Hospital Montreal

Montreal, Quebec, Canada

Site Status

Institut de réadaptation physique du Québec

Québec, Quebec, Canada

Site Status

Centre de réadaptation Estrie

Sherbrooke, Quebec, Canada

Site Status

Countries

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Canada

References

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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.

Reference Type RESULT
PMID: 26236009 (View on PubMed)

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.

Reference Type RESULT
PMID: 26010819 (View on PubMed)

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.

Reference Type RESULT
PMID: 23948680 (View on PubMed)

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.

Reference Type RESULT
PMID: 23112248 (View on PubMed)

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.

Reference Type RESULT
PMID: 28300820 (View on PubMed)

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.

Reference Type RESULT
PMID: 23363886 (View on PubMed)

Other Identifiers

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09-234-PED

Identifier Type: -

Identifier Source: org_study_id

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