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