The Canadian Cerebral Palsy Registry >
List of Contacts and Participating Centres >
Frequently Asked Questions >
Publications Based on Registry Data >
Read our update on the registry, celebrating World CP Day, 2018! >
Kids Brain Health Network is the primary funder of the Canadian CP Registry, a confidential, nation-wide collection of medical and social information about children with cerebral palsy gathered to identify potential risk factors related to pregnancy and interactions of the environment and genetics. Since data collection began in 2003, 2,035 children have been inscribed in Newfoundland, Nova Scotia, Quebec, Ontario, Alberta and British Columbia. The Registry is the first national registry for cerebral palsy in North America.
What is the purpose of the Registry?
The Canadian Cerebral Palsy Registry provides researchers with the approximate number of children with cerebral palsy across Canada and shows if these numbers differ from province to province. Data in the Registry aims to help researchers find reasons behind the cause of cerebral palsy, and supports studies which may lead to improvements in the overall care of children with CP.
List of Contacts and Participating Centres
The following is a list of centres across Canada participating in the CP Registry as well as individuals who may be contacted to answer your questions or concerns.
Glenrose Rehabilitation Hospital
10230 111 Ave NW, Edmonton, AB
Alberta Children’s Hospital
2888 Shaganappi Trail NW, Calgary, AB
Sunny Hill Health Centre for Children
3644 Slocan St. Vancouver BC V5M 3E8
BC Children’s Hospital
4480 Oak Street Vancouver, BC, V6H 3V4
Newfoundland & Labrador
Janeway Health Center
300 Prince Phillip Drive, St. John’s, NL
IWK Health Centre
5850-5980 University Ave, Halifax, NS
Holland-Bloorview Kids Rehabilitation Hospital
150 Kilgour Rd, Toronto, ON
Children’s Treatment Network
165 Ferris Ln, Barrie, ON
Institut de Réadaptation Physique du Québec (IRDPQ)
525 Boulevard Wilfrid-Hamel, Québec, QC
Centre de réadaptation Estrie (CR Estrie)
300 Rue King Est, Sherbrooke, QC
Centre de Réadaptation Marie-Enfant du CHU Sainte Justine (CRME)
5200, Bélanger East, Montreal, QC
Site Mackay, 3500 Décarie, Montréal, QC
Shriners Hospital Montreal
1003 boul Décarie, Montréal QC
Montreal Children’s Hospital
1001 boulevard Décarie, Montréal, QC
Centre de réadaptation Le Bouclier
1075 boulevard Firestone, Joliette, QC
Centre régional de réadaptation La RessourSe
135 boulevard Saint-Raymond, Gatineau, QC
Frequently Asked Questions
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
If you choose to participate, the Registry coordinator will ask you to sign an authorization to obtain a summary of you obstetrical chart as well as a summary of your child’s birth chart, medical chart and rehabilitation chart. He/she will also conduct a short interview with you to inquire as to your education and your obstetrical history. The coordinator will then complete 2 forms compiling all of the information from the interview and the medical records and will enter the de-identified information into a central database. The entire meeting will take approximately 30 minutes.
The written data on the paper files will be kept in locked file cabinets at the local Registry sites in the different Canadian regions. De-identified data from the recruitment sites will be uploaded into the Registry using a code to ensure privacy of data. Specifically, all of the data collected regionally will be entered in the electronic data bank using RedCap, a specialized software designed for medical data collection and distributed by Vanderbilt University. RedCap is web-based and uses 128 bit data encryption and provides role based security requiring a user ID and password for access. The central databank is located in Edmonton at the University of Alberta Hospital; the data collection system is housed on servers provided by the Women & Children’s Health Research Institute (WCHRI) in Edmonton. The servers are located in a secure data centre in the basement of Edmonton’s University Hospital. Data integrity is protected by multiple redundant power and cooling systems, RAID disk technology and regular back-up to tape. The Women & Children’s Health Research Institute in Edmonton in collaboration with the Neuroinformatics core of NeuroDevNet at UBC, is responsible for the day to day operations of the database, inclusive of IT support.
Outside researchers may obtain access to the de-identified data but only with permission from the Canadian Cerebral Palsy Registry Policy and Research Group and the University of Alberta ethics committee. The WCHRI of the University of Alberta agrees to hold in confidence all of the data received from the different centers across Canada. The data uploaded to the Canadian Cerebral Palsy Registry does not contain any personal identifying information. All of the parties contributing data to the Registry adhere to and comply with applicable laws and regulations regarding protection of personal information.
Each center entering data into the national Registry is regarded as an independent contributor of the CP data and retains all rights to their data. The data generated at each center shall remain at all times the property of each individual contributing institution. The data entered into the Canadian Cerebral Palsy Registry is only used for scientific purposes and shall not be used, directly or indirectly, for commercial purposes.
Publications Based on Registry Data
The Association Between Maternal Age and Cerebral Palsy Risk Factors
Schneider R, Ng P, Zhang X, Andersen J, Buckley D, Fehlings F, Kirton A, Wood E, van Rensburg E, Shevell M, Oskoui M. Pediatr Neurol, published online Feb 2018
Neonatal Infection in Children with Cerebral Palsy: A Registry-Based Cohort Study
Smilga AS, Garfinkle J, Ng P, Andersen J, Buckley D, Fehlings F, Kirton A, Wood E, van Rensburg E, Shevell M, Oskoui M. Pediatr Neurol, published online Dec 2017
Accuracy of administrative claims data for cerebral palsy diagnosis: a retrospective cohort study
Oskoui M, Ng P, Dorais M, Pigeon N, Koclas L, Lamarre C, Malouin F, Richards CL, Shevell M, Joseph L. CMAJ Open, Jul 2017
Prevalence Estimate of Cerebral Palsy in Northern Alberta: Births, 2008-2010
Robertson CM, Ricci MF, O’Grady K, Oskoui M, Goez H, Yager JY, Andersen JC. Can J Neurol Sci, Mar 2017
Children born at 32 to 35 weeks with birth asphyxia and later cerebral palsy are different from those born after 35 weeks
Garfinkle J, Wintermark P, Shevell MI, Oskoui M, Canadian Cerebral Palsy Registry. J Perinatol, Mar 2017
Clinical profile of children with cerebral palsy born term compared with late- and post-term: a retrospective cohort study
Frank R, Garfinkle J, Oskoui M, Shevell MI. BJOG, Sep 2016
Perinatal regionalization and implications for long-term health outcomes in cerebral palsy
Bolbocean C, Wintermark P, Shevell MI, Oskoui M. Can J Neurol Sci, Mar 2016
Cerebral palsy following neonatal encephalopathy: Do neonates with suspected asphyxia have worse outcomes?
Garfinkle J, Wintermark P, Shevell MI, Oskoui M. Dev Med Child Neurol, Nov 2015
Clinically relevant copy number variations detected in cerebral palsy
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. Nat Comm, Aug 2015
Cerebral Palsy following neonatal encephalopathy: How much is preventable?
Garfinkle J, Wintermark P, Shevell MI, Oskoui M. J Pediatr, Jul 2015
A population-based study of communication impairment in cerebral palsy
Zhang J, Oskoui M, Shevell MI. J Child Neurol, Mar 2015
Cerebral Palsy: Phenotypes and Risk Factors in Term Singletons Born Small for Gestational Age
Freire G, Shevell MI, Oskoui M. Eur J Paediatr Neurol, Mar 2015
Variation in cerebral palsy profile by socio-economic status
Oskoui M, Messerlian C, Blair A, Gamache P, Shevell MI. Dev Med Child Neurol, May 2015
Epidemiology of severe hearing impairment in a population-based cerebral palsy cohort
Dufresne D, Dagenais L, Shevell MI; REPACQ Consortium. Pediatr Neurol, Nov 2014
Chorioamnionitis and cerebral palsy: Lessons from a patient registry
Shevell A, Wintermark P, Benini R, Shevell MI, Oskoui M. Eur J Paediatr Neurol, May 2014
Spectrum of visual disorders in a population-based cerebral palsy cohort
Dufresne D, Dagenais L, Shevell MI; REPACQ Consortium. Pediatr Neurol Apr 2014
The epidemiology of cerebral palsy: New Perspectives from a Canadian Registry
Shevell, MI., Dagenais L, Oskoui M. Sem Pediatr Neurol, Jun 2013
Term neonatal encephalopathy antecedent cerebral palsy: a retrospective population-based study
Kyriakopoulos P, Oskoui M, Shevell MI. Eur J Paediatr Neurol, May 2013
Normal imaging in patients with cerebral palsy: What does it tell us?
Benini R, Dagenais L, Shevell MI. J Pediatr, Feb 2013
The prevalence of cerebral palsy in Quebec: alternative approaches
Oskoui M, Joseph L, Dagenais L, Shevell MI. Neuroepidemiology, Jan 2013
Does antenatal tobacco or alcohol exposure influence a child’s cerebral palsy? A population-based study
Kyriakopoulos P, Oskoui M, Shevell MI. Pediatr Neurol, Nov 2012
The relationship between gross motor function and manual ability in cerebral palsy
Oskoui M, Majnemer A, Dagenais L, Shevell MI. J Child Neurol, Oct 2012
Does the absence of an abnormal imaging study define a specific cerebral palsy subtype?
Benini R, Dagenais L, REPACQ Consortium, Shevell MI. Dev Med Child Neurol, Oct 2012
Congenital non-central nervous system malformations in cerebral palsy: a distinct subset?
Self L, Dagenais L, Shevell MI. Dev Med Child Neurol, May 2012
Prevalence and characteristics of severe sensory impairment in a population-based cohort of children with cerebral palsy
Dufresne D, Dagenais L, Shevell MI. Ann Neurol 72 (Suppl): S186, 2012.
Term neonatal encephalopathy antecedent cerebral palsy: A population-based analysis
Kyriakopoulos P, Oskoui M, Dagenais L, Shevell MI. Dev Med Child Neurol, May 2012
A population based study of neuroimaging findings in children with cerebral palsy
Towsley K, Shevell MI, Dagenais L, REPACQ Consortium. Eur J Pediatr Neurol, Jan 2011
Predicting comorbidities with neuroimaging in children with cerebral palsy
Legault G, Shevell MI, Dagenais L, REPACQ Consortium. Pediatr Neurol, Oct 2011
A Registry Based Assessment of Cerebral Palsy and Cerebral Malformations
Self L, Shevell MI, REPACQ Consortium. J Child Neurol, Nov 2010.
Determinants of ambulation in children with spastic quadriplegic cerebral palsy: a population-based study
Simard-Tremblay E, Shevell MI, Dagenais L, REPACQ Consortium. J Child Neurol, Jun 2010
Cross-sectional comparison of periventricular leukomalacia in preterm and term children
Lasry O, Shevell MI, Dagenais L, REPACQ Consortium. Neurology, Apr 2010
Comorbidities in cerebral palsy and their relationship to neurologic subtype and GMFCS level
Shevell MI, Dagenais L, Hall N, REPACQ Consortium. Neurology, Jun 2009
The relationship of cerebral palsy subtype and functional motor impairment: a population-based study
Shevell MI, Dagenais L, Hall N, REPACQ Consortium. Dev Med Child Neurol, Nov 2009
Communicating a diagnosis of Cerebral Palsy: an analysis of caregiver satisfaction & stress
Dagenais L, Hall N, Majnemer A, Birnbaum R, Dumas F, Gosselin J, Koclas L, Shevell MI. Pediatric Neurology, Dec 2006