CONP Portal | Dataset


Epilepsy Priority Setting Partnership
Creators: Ontario Brain Institute
Contact: Brain-CODE, datarelease@braincode.ca
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. https://www.sciencedirect.com/science/article/pii/S1525505022001226
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
Description:
Surveys responses from individuals in the Epilepsy community identifying questions that should be prioritized for epilepsy research.

Dataset README information

README.md

Epilepsy Priority Setting Partnership

EpLink, James Lind Alliance, Ontario Brain Institute

Overview

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

To gain access to Brain-CODE Open Data Release data, Study Investigators will need to sign up for an account at www.braincode.ca, agree to the Platform Terms of Use Agreement, and submit a request through the Data Release Dashboard (https://www.braincode.ca/content/dashboard#Epilepsy_Priorities). Learn more about Brain-CODE data sharing and governance via 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

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. https://www.epilepsybehavior.com/article/S1525-5050(22)00122-6/fulltext