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Cerebral Palsy Discovery Project (CPDP) - The Canadian Cerebral Palsy Registry (GTA Division)

Cerebral Palsy Discovery Project (CPDP)

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.

Within the CPDP, 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

Participate in this study

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 aged 2-7 who have CP and live in Toronto are invited to participate in CP-NET.  Children aged 2-6 years old who have CP and live in the City of Toronto or York Region are invited to participate in The Canadian Cerebral Palsy Registry.

What's Involved

When you participate in the CP-NET study:

Study participants will attend two research sessions, one when they are between the ages of 2-6 years old and again when they turn 7 years old. During these sessions, saliva will be collected from the child and their parents, parents will be asked to complete an interview and some questionnaires, the child will have a visit with a study doctor and medical records will be requested for review. Each session will take approximately 3 hours and certain components may be completed online or on the phone. The Participants will receive a $20 gift card and parking voucher at each session to thank them for their 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 a $5 Tim Horton’s gift card.

Deadline

Recruitment will end in 2018.

Interested in participating

If you are interested in participating in this study or have additional questions, please contact Val Semovski by telephone (416-425-6220 ext. 3632) or by email at vsemovski@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 three 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 third 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.  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 between 2-7 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?

If your child is participating in CP-NET, yes, your study visits will occur on-site because your child will be assessed by a study doctor and we can only complete the assessments at Holland Bloorview.  We will work with you to find the most convenient appointment time for you and your family.  We can offer alternative options for completing other aspects of the study.  For example, you can take the questionnaires home and return them by mail or you can complete them online from your home.  We can also complete the parent interview with you by telephone if that is more convenient.  When you contact us, we’ll work with you to find the most convenient options for you.

If your child is participating in 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

NeuroDevNet (National Centres of Excellence (NCE))


Learn more about this study




Please do not share any confidential information. The research team will contact you by phone or email to provide more details about this study.