Canadian CP Registry - Registre Canadien de la Paralysie Cérébrale

February 23, 2021 updated by: Maryam Oskoui, MD, MSc, FRCPC, FAAN, McGill University Health Centre/Research Institute of the McGill University Health Centre

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

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.

Study Overview

Status

Completed

Conditions

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 Type

Observational

Enrollment (Actual)

2771

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

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

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

1 year to 18 years (ADULT, CHILD)

Accepts Healthy Volunteers

No

Genders Eligible for Study

All

Sampling Method

Probability Sample

Study Population

Children living with a diagnosis of Cerebral Palsy in Canada.

Description

Inclusion Criteria:

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

Exclusion Criteria:

  • Uncertain CP diagnosis

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Characterize the CP profile across Canada
Time Frame: An average of every two years, up to study completion or ten years, whichever comes first.
CP subtype, severity, and associated conditions
An average of every two years, up to study completion or ten years, whichever comes first.

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

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

Collaborators

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

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

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

General Publications

Helpful Links

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (ACTUAL)

April 14, 2004

Primary Completion (ACTUAL)

April 1, 2020

Study Completion (ACTUAL)

April 1, 2020

Study Registration Dates

First Submitted

November 15, 2017

First Submitted That Met QC Criteria

November 22, 2017

First Posted (ACTUAL)

November 27, 2017

Study Record Updates

Last Update Posted (ACTUAL)

February 25, 2021

Last Update Submitted That Met QC Criteria

February 23, 2021

Last Verified

February 1, 2021

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • 09-234-PED

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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