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Cerebral Palsy Registry

We are creating a national registry of information about children with cerebral palsy.
About

The Cerebral Palsy Registry (BC Division) is a part of the Canadian Cerebral Palsy Registry, a confidential, nationwide collection of information about people with cerebral palsy in Canada. 

The information collected is held in a secure database and is non-identifiable. This will be the first national cerebral palsy registry in North America.

Who are we looking for?

  • Children with a diagnosis of Cerebral Palsy (CP)
  • Children born on or after January 1, 2009

Aims

The main aims of the CP Registry are:

  • to gain further understanding of the risk factors and causes of CP
  • to understand how often children are diagnosed with CP, and where they live in BC and in Canada  
  • to better understand parents' perspectives on their child's care and how services are provided to them

For more information about this study please go to:

www.cpregistry.ca


FAQs

How do I register my child?

If you have a child who has a diagnosis of cerebral palsy (CP) and who was born after January 1, 2009, you can register in a number of ways:

  • Give permission for your physician or health care professional to send your contact information to the project coordinator so that you can receive more detailed information in person
  • Contact the project coordinator directly so that you can receive more detailed information in person
  • If your child is identified as a candidate for the CP Registry and you receive a letter from the principal investigator with more information about the registry you can discuss further with the project coordinator once you are contacted

When you meet the project coordinator, you will have the option of participating in the registry. The project coordinator will review a “consent to participate” form that will explain the registry in detail. The coordinator will answer any questions you might have about the study. If you are unable to meet in person with the coordinator, the consent form can also be explained over the phone and mailed to you. At this point you are completely free to participate in the registry or refuse to participate. Your child’s medical care and his or her relationship with the physician concerned as well as with any other professionals will not be affected in any way.

Who is eligible to register?

All children with a diagnosis of CP born in 2009 or later and who reside in Canada are eligible to be registered in the CP Registry after the age of 2. The inclusion of age of 2 has been chosen as the diagnosis of CP is often difficult to confirm prior to this age. Children with CP born prior to 2009 will be excluded from the registry as 2009 has been chosen as the starting point in BC.

Why do we need a CP Registry?

Cerebral palsy is a disorder of movement and posture resulting from damage to the developing brain. It is the most common cause of physical disability in children in Canada. We want to better understand the causes of CP in BC and across Canada. We also want to know how often children are being diagnosed with CP and where they live in the different regions of BC and across the different provinces of Canada. By looking at this information across different regions, we might be able to find risk factors and understand more about the causes of CP. The CP Registry will provide a coordinated data collection system in Canada to increase the scope of research into CP and improve the quality of research by providing access to a large population sample.

 Can I change my mind about participating in the registry?

Yes.
Your participation in the CP Registry is voluntary. You will be asked to provide written consent to have your information included into the registry. You may also withdraw at any point. If you would like to withdraw your child’s information, contact the BC project coordinator who will remove your child’s non-identified information from the central web-based databank. At the local site, any paper copies will also be destroyed. Withdrawal from the registry will not disadvantage your child in any way or affect services being received.

What about my privacy?

We respect your privacy. The information you provide to the Canadian CP Registry is strictly confidential. Your personal information will only be seen by the principal investigator and the project coordinator in BC. The information data that will be uploaded into the Canadian CP Registry will NOT contain any personal identifying information. Your personal or contact details will never be provided to researchers or anyone else unless you specifically indicate it is okay to do so.

What about published information?

You are invited to browse the national CP Registry site: www.cpregistry.ca where research results will be posted.

Other questions?

If you have other questions, please email or phone the BC Project Coordinator.

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SOURCE: Cerebral Palsy Registry ( )
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