The CP-NET Child Cohort Clinical Database is designed to collect and store a lot of information about children with all types of CP. This way, researchers and clinicians can try to better understand what causes CP and develop treatments and therapies that work in the future. We want to find ways to improve care for children with CP in the future.
Clinicians from 4 clinical sites from across Ontario are recruiting children with CP, who are born after Jan 1, 2009, and we are acquiring a large database of information. There are 5 different data areas or platforms.
The first is the Clinical Risk Factor Platform which details risk variables from the birth records where the child was born. Pictures of the child’s brain which have been done for clinical purposes are also collected and reviewed again to create the Neuroimaging Platform. Saliva samples will be obtained and DNA stored for the creation of the Genomics Platform. Questionnaires are used to ask about daily living skills, pain, gross motor and fine motor abilities, communication, behaviour, sleep, physical activity, mental health, and activities that the child participates in to make up the Neurodevelopmental Platform and the Psychosocial & Participation Platform. We also collect data that serve as markers as to how well kids with CP in Ontario are doing as compared to international ‘Care Pathways’/Clinical Practice Guidelines. Data will be gathered initially at baseline and collected again once a year for 2 more years. Data can be collected in-person at the clinical sites or remotely.