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List of Contacts and Participating Centres >
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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.

For more information, visit the Registry website at www.cpregistry.ca. >

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.

Alberta

Centres
Glenrose Rehabilitation Hospital
10230 111 Ave NW, Edmonton, AB

Alberta Children’s Hospital
2888 Shaganappi Trail NW, Calgary, AB

Contacts
Northern Alberta
Dr John Andersen – jandersen@ualberta.ca
Kathleen O’Grady – kathleen.o’grady@albertahealthservices.ca

Southern Alberta
Dr Adam Kirton – adam.kirton@albertahealthservices.ca
Dr Alison Moore – alison.j.moore@albertahealthservices.ca
Mary McNeil – mary.mcneil@albertahealthservices.ca

British Columbia

Centres
Sunny Hill Health Centre for Children
3644 Slocan St. Vancouver BC V5M 3E8

BC Children’s Hospital
4480 Oak Street Vancouver, BC, V6H 3V4

Contacts
Dr Esias van Rensburg – evrensburg@cw.bc.ca
Diane Wickenheiser – dwickenheiser@cw.bc.ca

Newfoundland & Labrador

Centres
Janeway Health Center
300 Prince Phillip Drive, St. John’s, NL

Contacts
Dr David Buckley – david.buckley@easternhealth.ca
Dianne McGrath – dianne.mcgrath@easternhealth.ca

Nova Scotia

Centres
IWK Health Centre
5850-5980 University Ave, Halifax, NS

Contacts
Dr Ellen Wood – ellen.wood@dal.ca
Paula Dunn – paula.dunn@iwk.nshealth.ca

Ontario

Centres
Holland-Bloorview Kids Rehabilitation Hospital
150 Kilgour Rd, Toronto, ON

Children’s Treatment Network
165 Ferris Ln, Barrie, ON

Contacts
Dr Darcy Fehlings – dfehlings@hollandbloorview.ca
Hillary Carpenter – hcarpenter@hollandbloorview.ca
Susan Scott – sscott@ctnsy.ca
Valbona Semovski – vsemovski@hollandbloorview.ca

Quebec

Centres
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

Centre MAB-Mackay
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

Contacts
Dr Michael Shevell, Montreal, QC – michael.shevell@muhc.mcgill.ca
Dr Maryam Oskoui, Montreal, QC – maryam.oskoui@mcgill.ca
Sasha Dyck, RN, Montreal, QC – sasha.dyck@mail.mcgill.ca

Frequently Asked Questions

Cerebral palsy (CP) is the most common cause of physical and developmental impairment in children. It is most frequently caused by an abnormality of the developing brain, or an injury acquired during pregnancy, delivery or during the first weeks of life. While all children with cerebral palsy will have neuromotor impairment, up to half of children with cerebral palsy will also experience epilepsy, intellectual limitations, impairments of hearing and/or vision, language difficulties, behavioural challenges, and skeletal deformities such as scoliosis.
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
To participate in the Registry, speak to your child’s health professional to be referred to the appropriate Registry coordinator for your region. The Registry coordinator will provide you with detailed information pertaining to the Registry, review the consent form with you, and answer any questions which you may have.

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.

There are no direct advantages which could be gained from having participated in this study. However, the results obtained from analyzing the data in this registry will enable us to better understand the different facets of this condition especially with regards to the risk factors associated with cerebral palsy. It may also help improve the services to these children.
The information you provide to the Canadian CP registry will be kept confidential at all times. Your personal information and that of your child, such as your name and address, will only be accessible to the coordinator and the principal investigator at the site where your child will be enrolled. None of the information entered into the central database will contain personal information which could identify you or your child. Rather, a numerical code will be used when entering the de-identified data into the central database.

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.

Your participation in this Registry as well as that of your child are completely voluntary and you have the absolute right to refuse without any repercussions whatsoever. You are also free to remove your child and his data from the Registry at any time. You need only contact the coordinator and/or the principal investigator involved at the site where your child is enrolled and they will ensure that the data from the local registry and from the central repository are destroyed.
Feel free to contact the CP Registry directors, Dr Michael Shevell (michael.shevell@muhc.mcgill.ca) or Dr Maryam Oskoui (maryam.oskoui@mcgill.ca), or the CP Registry coordinator, Sasha Dyck (sasha.dyck@mail.mcgill.ca).

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
https://doi.org/10.1016/j.pediatrneurol.2018.01.005

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
http://www.sciencedirect.com/science/article/pii/S0887899417308470

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
http://www.ncbi.nlm.nih.gov/pubmed/28720597

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
http://www.ncbi.nlm.nih.gov/pubmed/28322177

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
http://www.ncbi.nlm.nih.gov/pubmed/28300820

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
http://www.ncbi.nlm.nih.gov/pubmed/27592548

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
https://www.ncbi.nlm.nih.gov/pubmed/26790470

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
https://www.ncbi.nlm.nih.gov/pubmed/26555029

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
https://www.ncbi.nlm.nih.gov/pubmed/26236009

Cerebral Palsy following neonatal encephalopathy: How much is preventable?
Garfinkle J, Wintermark P, Shevell MI, Oskoui M. J Pediatr, Jul 2015
https://www.ncbi.nlm.nih.gov/pubmed/25841543

A population-based study of communication impairment in cerebral palsy
Zhang J, Oskoui M, Shevell MI. J Child Neurol, Mar 2015
https://www.ncbi.nlm.nih.gov/pubmed/25051968

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
https://www.ncbi.nlm.nih.gov/pubmed/25596065

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
https://www.ncbi.nlm.nih.gov/pubmed/26010819

Epidemiology of severe hearing impairment in a population-based cerebral palsy cohort
Dufresne D, Dagenais L, Shevell MI; REPACQ Consortium. Pediatr Neurol, Nov 2014
https://www.ncbi.nlm.nih.gov/pubmed/25194720

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
https://www.ncbi.nlm.nih.gov/pubmed/24412077

Spectrum of visual disorders in a population-based cerebral palsy cohort
Dufresne D, Dagenais L, Shevell MI; REPACQ Consortium. Pediatr Neurol Apr 2014
http://www.ncbi.nlm.nih.gov/pubmed/24468636

The epidemiology of cerebral palsy: New Perspectives from a Canadian Registry
Shevell, MI., Dagenais L, Oskoui M. Sem Pediatr Neurol, Jun 2013
https://www.ncbi.nlm.nih.gov/pubmed/23948680

Term neonatal encephalopathy antecedent cerebral palsy: a retrospective population-based study
Kyriakopoulos P, Oskoui M, Shevell MI. Eur J Paediatr Neurol, May 2013
https://www.ncbi.nlm.nih.gov/pubmed/23195237

Normal imaging in patients with cerebral palsy: What does it tell us?
Benini R, Dagenais L, Shevell MI. J Pediatr, Feb 2013
https://www.ncbi.nlm.nih.gov/pubmed/22944004

The prevalence of cerebral palsy in Quebec: alternative approaches
Oskoui M, Joseph L, Dagenais L, Shevell MI. Neuroepidemiology, Jan 2013
https://www.ncbi.nlm.nih.gov/pubmed/23363886

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
https://www.ncbi.nlm.nih.gov/pubmed/23044017

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
https://www.ncbi.nlm.nih.gov/pubmed/23112248

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
http://connection.ebscohost.com/c/abstracts/74637228/47th-annual-congress-canadian-neurological-sciences-federation

Congenital non-central nervous system malformations in cerebral palsy: a distinct subset?
Self L, Dagenais L, Shevell MI. Dev Med Child Neurol, May 2012
https://www.ncbi.nlm.nih.gov/pubmed/22577967

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
http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2012.04283.x/pdf

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
https://www.ncbi.nlm.nih.gov/pubmed/20869285

Predicting comorbidities with neuroimaging in children with cerebral palsy
Legault G, Shevell MI, Dagenais L, REPACQ Consortium. Pediatr Neurol, Oct 2011
http://www.ncbi.nlm.nih.gov/pubmed/21907883

A Registry Based Assessment of Cerebral Palsy and Cerebral Malformations
Self L, Shevell MI, REPACQ Consortium. J Child Neurol, Nov 2010.
https://www.ncbi.nlm.nih.gov/pubmed/20223748

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
https://www.ncbi.nlm.nih.gov/pubmed/19794101

Cross-sectional comparison of periventricular leukomalacia in preterm and term children
Lasry O, Shevell MI, Dagenais L, REPACQ Consortium. Neurology, Apr 2010
https://www.ncbi.nlm.nih.gov/pubmed/20421583

Comorbidities in cerebral palsy and their relationship to neurologic subtype and GMFCS level
Shevell MI, Dagenais L, Hall N, REPACQ Consortium. Neurology, Jun 2009
https://www.ncbi.nlm.nih.gov/pubmed/19528515

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
https://www.ncbi.nlm.nih.gov/pubmed/19416339

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
https://www.ncbi.nlm.nih.gov/pubmed/17138010