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CP-NET: Hemi-NET Clinical Database Release

Cerebral Palsy Neuroscience Discovery Network (CP-NET)

Overview

This controlled data release focuses on CP-NET's initial Clinical Database which solely focused on children and youth, aged 2-18, with a confirmed diagnosis of hemiplegic cerebral palsy (CP). The Hemi-NET Clinical Database has data on 320 children and youth from across Ontario. The released data is organized around the following platforms: (1) Clinical Risk Factor Platform: clinically relevant neonatal and obstetric risk factors from obstetrical and neonatal health charts, (2) Genomics Platform: saliva samples acquired from the index child and both biological parent(s), (3) Neuroimaging Platform: standardized coding of clinically acquired neuroimaging, (4) Neurodevelopmental Platform: standardized assessments of gross motor, fine motor, language, cognitive, behavioural function, and self-reported quality of life.

Data organization

Data is organized into packages by Imaging Scan Type, Genomic Data Type, and Clinical Data Collection Domain.

Access information

To gain access to Brain-CODE Controlled Data Release data, Study Investigators will submit requests via Data Release Portals at www.braincode.ca. These requests will be reviewed by the Brain-CODE Data Access Committee and the Brain-CODE Steering Committee. Learn more about these Committees in the Brain-CODE Governance Policy (https://braininstitute.ca/docs/Brain-CODE-Governance-Policy-version-FINAL.pdf). "

Visit the Brain-CODE Knowledge Base to learn more about our data releases.

Citation

Fehlings D, Krishnan P, Ragguett RM, deVeber G, Gorter JW, Hunt C, Kim M, Mesterman R. McCormick A, CP-NET Group. Neurodevelopmental profiles of children with unilateral cerebral palsy associated with middle cerebral artery and periventricular venous infarctions. Dev Med Child Neurol; 2021, 63: 729-735. https://doi.org/10.1111/dmcn.14818

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