Controlled Data Releases

Ontario Neurodegenerative Disease Research Initiative (ONDRI): Foundational Study Baseline Data - Release 1

Dr. Mario Masellis, Dr. Douglas Munoz, Dr. Michael Strong, Dr. Richard Swartz, ONDRI study team

ONDRI’s Foundational study includes data from 520 people living with Alzheimer’s Disease, Mild Cognitive Impairment, Parkinson’s Disease, Amyotrophic Lateral Sclerosis, Frontotemporal Dementia, or Cerebrovascular Disease, along with their care partners. Detailed clinical, cognitive, genetic, gait, balance, eye tracking, retinal imaging, and neuroimaging assessments were performed that enable multi-modality within- and across-disease analyses. Data were collected from 2014-18, and were standardized, cleaned and curated facilitating open access and sharing.

For further information

Characteristics of the Ontario Neurodegenerative Disease Research Initiative cohort, submitted

K.M. Sunderland et al.

Additional Resources

ONDRI’s Research Initiative

ONDRI’s Data Standards

Data Standards and Processes Videos

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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

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.

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5P: Predicting Persistent Postconcussive Problems in Pediatrics

Dr. Roger Zemek, Dr. Martin Osmond and the Pediatric Emergency Research Canada (PERC) Concussion Team

Concussion is a common injury occurring in children and adolescents, and results in a wide variety of effects spanning physical, cognitive (thinking), psychological/behavioural, or sleep. While most cases of concussion improve within weeks, approximately one third of children have on-going symptoms for longer than 1 month, known as persistent post concussive symptoms (PPCS).

The goal of the 5P study was to derive and validate easy to use prognosticators for clinicians to identify children and youth for risk of PPCS. A 12-point PPCS risk score was developed which includes nine diagnostic variables: sex, age, physician-diagnosed migraine history, prior concussion symptoms duration, headache, sensitivity to noise, fatigue, answering questions slowly, and errors on the Balance Error Scoring System tandem stance. Among children presenting to the emergency department with concussion and head injury within the previous 48 hours, the clinical risk score demonstrated modest ability to discriminate PPCS risk at 28 days.

This project was funded by CIHR, ONF, CHEO Foundation, CHEO Research Institute, and the University of Ottawa Brain and Mind Research Institute.

Data Profile

Standardized clinical outcome measures from 3,063 participants aged 5-18 years old, recruited across nine Canadian pediatric emergency departments.


Zemek R, Osmond MH, Barrowman N for PERC Concussion Team. Predicting and preventing postconcussive problems in paediatrics (5P) study: protocol for a prospective multicentre clinical prediction rule derivation study in children with concussion. BMJ Open. 2013 Aug 1;3(8). pii:e003550. doi: 10.1136/bmjopen-2013-003550. PubMed PMID: 23906960

Zemek R, Barrowman N, Freedman S, et al for the Pediatric Emergency Research Canada (PERC) Concussion Team. Clinical Risk Score for Persistent Postconcussion Symptoms Among Children With Acute Concussion in the ED. JAMA. 2016 Mar 8; 315(10): 1014-1025. PMID: 26954410

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