© 2019 The Canadian Cerebral Palsy Registry

About

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. Since the initiation of inscription of children with CP into the Registry in 2003, more than 2,150 children have been enrolled in Newfoundland, Nova Scotia, Quebec, Ontario, Alberta and British Columbia. The Registry is the first national registry for cerebral palsy in North America.

 

Frequently Asked Questions

 

  • What is Cerebral Palsy?

  • What is the purpose of the CP Registry?

  • How can I participate?

  • How will my information be managed?

  • How will I benefit from participating in this project?

  • Can I change my mind about participating in the Registry?

  • Further questions

 

 

 

What is cerebral palsy?

 

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.

 

 

What is the purpose of the Registry?

 

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

 
 

 

How can I participate?

 

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.

How will I benefit from participating in this project?

 

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.

 

How will my information be managed?

 

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 Kids Brain Health Network 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 centres 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.

 

Can I change my mind about participating in the Registry?

 

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.

 

Other questions?

 

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 (info@cpregistry.ca).

 

You can also connect with us by using the form on our Contact page.