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Province of Ontario Neurodevelopmental Disorders Network (POND) Registry Clinical Data

Dr. Evdokia Anagnostou, Dr. Jason Lerch, Dr. Paul D. Arnold, Dr. Rob Nicolson, Dr. Stelios Georgiades, Dr. Stephen W. Scherer, Dr. Russell Schachar, Dr. Jennifer Crosbie, Dr. Peter Szatmari, Dr. Xudong Liu, Dr. Elizabeth Kelley, Dr. Muhammad Ayub and Dr. Karun Singh. POND Network

Overview

The Province of Ontario Neurodevelopmental Disorders (POND) Network is an Integrated Discovery Program funded by the Ontario Brain Institute, and aims to understand the neurobiology of neurodevelopment disorders and translate the findings into effective new treatments. Neurodevelopmental disorders investigated as part of this program include attention deficit/hyperactivity disorder, autism spectrum disorder, intellectual disability, obsessive compulsive disorder, Tourette syndrome, Rett syndrome, Down syndrome, Fragile X syndrome and any other genetic differences associated with neurodevelopmental disorder difficulties.

This controlled data release includes demographic, medical history data, behavioural and cognitive assessments for over 2000 children and youth diagnosed with various neurodevelopmental disorders as well as typically developing children and youth.

Data organization

Data is organized into packages by Primary Diagnosis, Data Collection Domain, and Data Collection Form.

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

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