The Canadian Cerebral Palsy Registry (GTA Division)

 


Summary

Cerebral palsy (CP) is the most frequent cause of physical disability in children in Canada, affecting 2-2.5/1000 children every year. This condition is often accompanied by co-morbidities such as visual impairment, auditory limitations, communication difficulties and/or seizures, thereby warranting much needed research into identifying risk factors associated with this disability.

This project aims to establish a Canadian Cerebral Palsy Registry, to provide an epidemiologic profile of CP in Canada reflecting the full heterogeneity of the disorder and provide a platform for population-based research on CP. It will serve to estimate the incidence, prevalence and distribution of cerebral palsy in Canada, while facilitating research in this field. The Canadian CP Registry will be an expansion of an existing registry in Quebec and has currently been expanded to include children with CP from British Columbia, Alberta, Greater Toronto Area (Toronto & York Regions), Quebec, Nova Scotia, and Newfoundland.


Researcher(s)

Darcy Fehlings, MD,Oskoui M, Shevell M

Call to action:

Has your child been diagnosed with Cerebral Palsy (CP)? Consider participating in one or both of our research studies:

CP-NET

and/or

The Canadian Cerebral Palsy Registry

We’re working on building two databases of information about kids in Ontario (CP-NET) and across Canada (The Canadian CP Registry) who have been diagnosed with CP.  Our goal is to better understand how many kids are affected by CP in different parts of Ontario and Canada and to better understand the causes of CP.  We’re hoping that learning more about what causes CP will transform care and treatments for children and their families.”

 

Who can participate

Children with CP who are 2 years and older, born after January 1st 2009 and who live anywhere in Ontario are invited to participate in CP-NET. Children born after January 1st 2008, who have CP and live in the City of Toronto are invited to participate in The Canadian Cerebral Palsy Registry.

 

What's Involved

When you participate in the CP-NET study:

You may choose to attend either one or two research sessions. The first session would occur shortly after you have given consent to participate, and the second one when your child turns 6 (or a year following the first session, if they were already older than 5 years at the first session).During the first se session, saliva will be collected from your child and their biological parents, parents will be asked to complete an interview and some questionnaires, and medical records will be requested for review. This session will take approximately 3 hours.. If you choose to participate in a second session, we will ask you to complete several questionnaires which will update our information about your child’s health and wellbeing. This session would take approximately 30 minutes You will receive a $20 gift card, parking voucher and/or reimbursement for use of public transit at each session to thank you for your time. This study will help us learn more about risk factors associated with CP.

When you participate in The Canadian Cerebral Palsy Registry:

We’ll ask to meet with you one time.  During this visit, a member of our research staff will ask you to sign several forms: a study consent form which tells us that you’d like to participate in the project and personal health information release forms that give us permission to look at specific parts of your health record and your child’s health records.  Last, we’ll ask you some questions about your medical history, your child’s birth, and your child’s diagnosis of CP.  The entire visit usually takes about 30 minutes.  If you’d like an interpreter present, we can arrange that for you.  As a token of our appreciation, we’ll give you a one-time use Holland Bloorview parking pass and/or reimbursement for use of public transit, and a $5 Tim Horton’s gift card. If you would like to participate in both CP-NET and CP-Registry, you may complete both in the same session. Deadline:  Recruitment will end in 2023.

 

Interested in participating?

If you are interested in participating in this study or have additional questions, please contact Natasha Causton by telephone (416-425-6220 ext. 3606) or by email at ncauston@hollandbloorview.ca with your interest and she will get back to you. Contacting us does not obligate you or your child to participate in the study.

Frequently Asked Questions 

 

  • I’d like to participate in both CP-NET and The Canadian Cerebral Palsy Registry.  Do I have to come in for separate appointments?

A lot of the same information is collected for CP-NET and The Canadian Cerebral Palsy Registry because both studies are databases of information about kids with CP.  If you’d like to participate in both studies, we won’t ask you to come in for a separate  appointment.  Instead, we’ll book your initial CP-NET appointment and ask you to sign the forms for the CP Registry at that time.  We’ll make sure that you’re clear about which forms are for CP-NET and which forms are for the CP Registry.  You may still choose to attend a second visit for CP-NET. If you have any concerns about scheduling, give us a call or send us an email and we’ll work with you to find the most convenient appointment options.

 

  • I’d like to participate in the study but my child wasn’t born in Canada.  Am I still eligible to participate?

Absolutely! Children who were born outside of Canada are welcome to participate in these studies.  We welcome all families who live in the GTA and have a child older than 2 years old who has been diagnosed with CP regardless of where your child was born.

 

  • Can children who were adopted or who live with someone other than their birth parent(s) participate in the study?

Definitely! We welcome all families regardless of the biological relationship between parents and their children.  If your child is not biologically related to you, we may not collect saliva samples from you or your family.  Also, we may not be able to access some parts of the health record but we will discuss this with you as each family is unique.

 

  • Do I have to come into Holland Bloorview to participate in this project?

To participate in CP-NET, we will need to see you at Holland Bloorview for at least one visit. You may choose to complete one or two sessions – at the second visit we would ask you to complete several questionnaires to update our information about your child’s health and wellbeing. We will work with you to find the most convenient appointment time for you and your family. If your child is participating in only The Canadian Cerebral Palsy Registry, we can offer alternate arrangements to complete the components of the study.  When we speak with you, we’ll discuss your options and find the most convenient arrangement for you.  We don’t want your participation in these projects to be an inconvenience for you and your family.

 

  • My child only comes to Holland Bloorview for special services; otherwise, my child attends a different rehabilitation centre.  Do we have to come to Holland Bloorview to participate?

Both CP-NET and The Canadian Cerebral Palsy Registry are multi-site projects.  Multi-site means that the studies are being conducted at many pediatric rehabilitation centres across Ontario and Canada. The pediatric rehabilitation centre you participate at will be based on where you live.  These projects are the same regardless of which center you participate through.  The components of the projects don’t change but we’ll help you contact the center that’s closest to you.

 

  • Will I get any updates about the information you find about my child?

We plan on sending all families an update about the findings of these research studies once we’ve analyzed all of the information we collect.  You can tell us whether or not you’d like to receive this information.  CP-NET also hosts family forums and information conferences and you are welcome to attend these events to stay up-to-date about the project.

 

    Funding Agency

    Kid's Brain Health Network

    Learn more about this study