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Canadian CP Registry - Registre Canadien de la Paralysie Cérébrale

Sponsor
McGill University Health Centre/Research Institute of the McGill University Health Centre (Other)
Overall Status
Completed
CT.gov ID
NCT03353194
Collaborator
Kids Brain Health Network (Other), Children's Treatment Network (Other), Montreal Children's Hospital of the MUHC (Other), Alberta Children's Hospital (Other), Women and Children's Health Research Institute, Canada (Other), Provincial Health Services Authority (Other), IWK Health Centre (Other), The Hospital for Sick Children (Other), Holland Bloorview Kids Rehabilitation Hospital (Other)
2,771
Enrollment
15
Locations
191.6
Actual Duration (Months)
184.7
Patients Per Site
1
Patients Per Site Per Month

Study Details

Study Description

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.

Condition or Disease Intervention/Treatment Phase

    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

    Study Design

    Study Type:
    Observational [Patient Registry]
    Actual Enrollment :
    2771 participants
    Observational Model:
    Other
    Time Perspective:
    Prospective
    Official Title:
    The Canadian Cerebral Palsy Registry - Le Registre Canadien de la Paralysie Cérébrale
    Actual Study Start Date :
    Apr 14, 2004
    Actual Primary Completion Date :
    Apr 1, 2020
    Actual Study Completion Date :
    Apr 1, 2020

    Outcome Measures

    Primary Outcome Measures

    1. Characterize the CP profile across Canada [An average of every two years, up to study completion or ten years, whichever comes first.]

      CP subtype, severity, and associated conditions

    Eligibility Criteria

    Criteria

    Ages Eligible for Study:
    18 Months to 18 Years
    Sexes Eligible for Study:
    All
    Accepts Healthy Volunteers:
    No
    Inclusion Criteria:

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

    • Diagnosed with Cerebral Palsy

    • Living in Canada

    Exclusion Criteria:
    • Uncertain CP diagnosis

    Contacts and Locations

    Locations

    Site City State Country Postal Code
    1 Alberta Children's Hospital Calgary Alberta Canada
    2 Glenrose Rehabilitation Hospital Edmonton Alberta Canada
    3 Sunny Hill Health Centre for Children Vancouver British Columbia Canada
    4 Janeway Health Center St. John's Newfoundland & Labrador Canada
    5 IWK Health Centre Halifax Nova Scotia Canada
    6 Children's Treatment Network Barrie Ontario Canada
    7 Holland-Bloorview Kids Rehabilitation Hospital Toronto Ontario Canada
    8 Centre régional de réadaptation La RessourSe Gatineau Quebec Canada
    9 Centre de réadaptation Le Bouclier Joliette Quebec Canada
    10 Centre de Réadaptation Marie-Enfant Montréal Quebec Canada
    11 MAB-Mackay Rehabilitation Centre Montréal Quebec Canada
    12 Montreal Children's Hospital Montréal Quebec Canada
    13 Shriners Hospital Montreal Montréal Quebec Canada
    14 Institut de réadaptation physique du Québec Quebec City Quebec Canada
    15 Centre de réadaptation Estrie Sherbrooke Quebec Canada

    Sponsors and Collaborators

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

    Investigators

    • Principal Investigator: Michael I Shevell, MDCM, McGill University Health Centre/Research Institute of the McGill University Health Centre
    • Principal Investigator: Maryam Oskoui, MD, MSc, McGill University Health Centre/Research Institute of the McGill University Health Centre

    Study Documents (Full-Text)

    None provided.

    More Information

    Additional Information:

    Publications

    None provided.
    Responsible Party:
    Maryam Oskoui, MD, MSc, FRCPC, FAAN, Associate Professor, Departments of Pediatrics and Neurology & Neurosurgery, McGill University Health Centre/Research Institute of the McGill University Health Centre
    ClinicalTrials.gov Identifier:
    NCT03353194
    Other Study ID Numbers:
    • 09-234-PED
    First Posted:
    Nov 27, 2017
    Last Update Posted:
    Feb 25, 2021
    Last Verified:
    Feb 1, 2021
    Studies a U.S. FDA-regulated Drug Product:
    No
    Studies a U.S. FDA-regulated Device Product:
    No
    Keywords provided by Maryam Oskoui, MD, MSc, FRCPC, FAAN, Associate Professor, Departments of Pediatrics and Neurology & Neurosurgery, McGill University Health Centre/Research Institute of the McGill University Health Centre
    Cerebral Palsy
    Canada
    Registry
    Additional relevant MeSH terms:
    Cerebral Palsy

    Study Results

    No Results Posted as of Feb 25, 2021