Frequently Asked Questions

Will my information be kept confidential?
What is the purpose of a CP Registry?
What if I change my mind about participating in the Registry?
Will I have access to publications on findings from the Registry?
How will I benefit from participating in this project?
 


Frequently Asked Questions

Will my information be kept confidential?

Yes, the information you provide to the Canadian CP registry will be kept confidential at all times. Your personal information and that of your child, such as your name and address, will only be accessible to the coordinator and the principal investigator at the site where your child will be enrolled. None of the information entered into the central database in Alberta will contain personal information which could identify you or your child. Rather, a numerical code will be used when entering the de-identified data into the central database located in Alberta. Visit our page on Data Access and Provisions for Security and Confidentiality for more details.

What is the purpose of a CP Registry?

Cerebral palsy is the most common cause of physical disability in children in Canada and it is important that we gain a better understanding of its prevalence, risk factors and current clinical profile. The Canadian CP Registry provides valuable data from different Canadian regions which can be shared and analyzed so as to provide answers to these important questions. Specifically, the Registry will serve to:

  • Characterize the CP profile across the country in terms of subtype, severity, associated conditions, etc.
  • Identify risk factors associated with CP
  • Calculate the prevalence of CP across the country, while comparing values in different regions
  • Provide a platform for subject recruitment for population-based research on CP

What if I change my mind about participating in the Registry?

Your participation in this Registry as well as that of your child are completely voluntary and you have the absolute right to refuse without any repercussions whatsoever. You are also free to remove your child and his data from the Registry at any time. You need only contact the coordinator and/or the principal investigator involved at the site where your child is enrolled and they will ensure that the data from the local registry and from the central repository are destroyed.

Will have I have access to publications on findings from the Registry?

When the results of the studies are published, you will be given the option of receiving either a copy of the published manuscripts or a lay summary of the articles prepared by the research team.

How will I benefit from participating in this project?

There are no direct advantages which could be gained from having participated in this study. However, the results obtained from analyzing the data in this registry will enable us to better understand the different facets of this condition especially with regards to the risk factors associated with cerebral palsy. It may also help improve the services to these children.

Have a question that's not on the list?

Please feel free to contact the CP Registry co-directors, Dr Maryam Oskoui (Maryam.oskoui[at]mcgill.ca) or Dr Michael Shevell (Michael.shevell[at]muhc.mcgill.ca) and/or the CP Registry National Coordinator, Sasha Dyck (Sasha.dyck[at]mail.mcgill.ca) with any other questions.

You can also connect with the principal investigators on our Contact List.