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

To gain access to Brain-CODE Open Data Release data, Study Investigators will need to sign up for an account at, agree to the Platform Terms of Use Agreement, and submit a request through the Data Release Dashboard ( Learn more about Brain-CODE data sharing and governance via the Brain-CODE Governance Policy (

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


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.

Download Using DataLad

CircleCI status

The following instructions require a basic understanding of UNIX/LINUX command lines. Future portal functionality may include downloads directly from the web browser. Dataset download is currently enabled through DataLad.

Note: The conp-dataset requires version >=0.12.5 of DataLad and version >=8.20200309 of git-annex.

To install DataLad on your system, please refer to the install section of the DataLad Handbook (installation via miniconda is recommended in order to obtain the latest version of DataLad).

1) Initiate the CONP dataset

To initiate the CONP dataset (conp-dataset), run the following command in the directory where you want CONP datasets to be installed:

datalad install

2) Install the braincode_Epilepsy_Priority_Setting_Partnership dataset

To install the dataset, go into the created conp-dataset directory and run datalad install on the dataset braincode_Epilepsy_Priority_Setting_Partnership:

cd conp-dataset
datalad install projects/braincode_Epilepsy_Priority_Setting_Partnership

3) Download the braincode_Epilepsy_Priority_Setting_Partnership dataset

Now that the DataLad dataset has been installed, go into the dataset directory under projects/braincode_Epilepsy_Priority_Setting_Partnership.

cd projects/braincode_Epilepsy_Priority_Setting_Partnership

Note that files visible in the dataset are symlinks and will need to be downloaded manually using the datalad get command in the dataset directory:

datalad get <filepath>

Note, if you run datalad get * command, all the files present in the dataset directory will be downloaded.

For more information on how DataLad works, please visit the DataLad Handbook documentation .