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, Hunt C, McCormick A, Mesterman R, Rivers J, Gorter JW, Paterson A, Wintle R, Dlamini N
Call to action
Has your child been diagnosed with Cerebral Palsy (CP)? Consider participating in our research study CP-NET.
We’re working on building a database of information about kids in Ontario (CP-NET) 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 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 are invited to participate in CP-NET.
Funding agency
Ontario Brain Institute (OBI)
Deadline
Interested in participating
If you are interested in participating in this study or have additional questions, please contact Rachel Willis at rwillis@hollandbloorview.ca or by telephone (416-425-6220 ext. 3606) 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 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 that 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.
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Do I have to come into Holland Bloorview to participate in this project?
You may choose to participate in CP-NET in person or virtually. 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. 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?
CP-NET is a multi-site project. Multi-site means that the study is being conducted at many pediatric rehabilitation centres across Ontario. 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.
Additional information
In this study, the CP-NET Clinical Database Platforms, we will create a population-based database of CP that integrates detailed information about risk factors, neuropathology, neurodevelopmental and psychosocial status and genomics. In this study, we will recruit a population-based cohort of children with CP born after Jan 1, 2009 from 5 children’s treatment centres across Ontario. Data will be gathered initially at baseline, confirmed at 5 years of age, and additional data will optionally be collected again when the child is 6 years of age.
The core element of CP-NET is the Clinical Database Platform consisting of five clinical database platforms. The Clinical Risk Factor Platform will detail risk variables from neonatal and maternal health records. Neuroimaging exams that have previously been done for clinical purposes will be obtained, read, coded, and analyzed to create the Neuroimaging Platform. Saliva samples will be obtained and DNA stored for the creation of the Genomic Platform. Standardized developmental outcome measures including identification of co morbidities, cognitive profile, pain assessment, and gross motor, fine motor, and communication classifications will be administered to create the Neurodevelopmental Platform. Finally, assessment of mental health, sleep, quality of life and participation will comprise the Psychosocial & Participation Platform.
