CONP Portal | Dataset

Epilepsy Priority Setting Partnership
Creators: Ontario Brain Institute
Contact: Brain-CODE,
Licenses: Refer to Brain-CODE Governance Policy
Version: 1.0
Formats: CSV
Size: 2.6 MB
No of Files: 1
No of Subjects: 473
Primary Publication: Canadian epilepsy priority-setting partnership: Toward a new national research agenda . et al. Epilepsy & Behavior.
Metadata file: DATS.json
Is About: Homo sapiens
Acknowledges: Ontario Brain Institute, EpLink, Government of Ontario, James Lind Alliance
Spatial Coverage: CANADA
Other Dates: Start Date: 2019-10-01 00:00:00 -- End Date: 2021-03-31 00:00:00
Surveys responses from individuals in the Epilepsy community identifying questions that should be prioritized for epilepsy research.

Dataset README information

Epilepsy Priority Setting Partnership

EpLink, James Lind Alliance, Ontario Brain Institute


A Priority Setting Partnership for epilepsy and seizures was conducted by the Ontario Brain Institute, its epilepsy research program, EpLink, and the James Lind Alliance.

The final top 10 list reflects the priority areas of focus for research as identified by the Canadian epilepsy community, including genetic markers for diagnosis and treatment, concerns about living with the long-term effects of epilepsy, and addressing knowledge gaps in etiology and treatment approaches.

Data organization and file format

Data is organized into a single CSV file that includes 2126 original questions submitted via survey, 95 summary questions generated from the original submissions, and citations and links to publications supporting the Summary Questions. Demographics data for survey participants is available upon request.

Access information

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Singh A, Woelfle R, Chepesiuk R, Southward C, Antflick J, Cowan K, Hum K, Ng M, Burneo JG, Marti AS. Canadian epilepsy priority-setting partnership: Toward a new national research agenda. Epilepsy & Behavior. 2022 May 1;130:108673.