If you are interested in participating in this study or have additional questions, please contact Valbona Semovski at email@example.com or by telephone (416-425-6220 ext. 3632) 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.