Childhood Cerebral Palsy Integrated Neuroscience Discovery Network “CP-NET” – Clinical Database Platforms
Summary
The Childhood Cerebral Palsy (CP) Integrated Neuroscience Discovery Network “CP-NET” is designed to bring together children with CP, their families, and clinical and basic scientists to foster neuroscience discoveries through integrated translation. Understanding the underlying neuroscience mechanisms, pathology, physiology, and genomics of CP is critical to developing improved treatments. In particular there is a critical need to link translationally-oriented neuroscience research with cutting-edge neurorehabilitation approaches for CP.
Researcher(s)
Darcy Fehlings, MD, Anne Kawamura, MD, Alazem H, Hunt C, Knights S, McCormick A, Mesterman R, Wintle R, Dlamini N
Call to action
Has your child been diagnosed with Cerebral Palsy (CP)? Consider participating in our research study.
You are being invited to participate in a study that involves building an Ontario Cerebral Palsy (CP) Clinical Database, called “CP-NET”. You are invited to participate in this study because you are/have a child who has a diagnosis of CP. The purpose of this project is to store a lot of information about children with all sub-types of CP. This way, researchers and clinicians can try to better understand what causes cerebral palsy and develop treatments and therapies that work in the future.
Who can participate
Children with CP who are 2 years and older, born after January 1st 2009 are invited to participate in CP-NET.
Funding agency
Ontario Brain Institute (OBI)
What's involved
When you participate in the CP-NET study:
Participants will attend three research sessions. First session occurs shortly after they consent to participate, the second session occurs one-year after the first session, and the third session occurs one year after the second session. During these sessions, saliva will be collected from the child and their parents, parents will be asked to complete an interview and some questionnaires and medical records of the child and birth mother (if available) will be requested for review. This will take approximately 1.5-2 hours and the second and third sessions will take about 30 minutes each. All sessions can be completed on-site or remotely. Forms and other research materials can be mailed to participants’ homes with a return postage stamp to return materials. Participants will receive a $20 gift card and be reimbursed for parking/public transport at each session, if required.
Deadline
Interested in participating
If you are interested in participating in this study or have additional questions, please contact Terry Ho at tho@hollandbloorview.ca or by telephone (416-425-6220 ext. 6276) with your interest and he will get back to you. Contacting us does not obligate you or your child to participate in the study.
