Epilepsy (Canada) PSP open dataset available

Date: 20 June 2022

The Ontario Brain Institute, its epilepsy research program, EpLink, and the James Lind Alliance (JLA) have released an open set of data gathered via national surveys in the Epilepsy (Canada) JLA Priority Setting Partnership.  The surveys identified the most pressing concerns of patients, their families, and health professionals about epilepsy and seizures.

This dataset includes over 2,100 questions from more than 500 people from across Canada who completed the survey.  It includes the 95 unanswered research questions developed from the original survey submissions, as well as those submissions considered out of scope.  

These questions were used to develop a Top 10 list of research priorities and give a stronger voice to Canadians who live with epilepsy every day.  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.

Sharing the results of this priority-setting exercise on Brain-CODE provides the opportunity for researchers and funding agencies across the globe to align their agendas with the values and needs of the epilepsy community in order to improve clinical outcomes and quality of life for people living with epilepsy and seizures.

You can read more about the data and access it by visiting the Brain-Code portal and read the announcement from the Ontario Brain Institute on their website. 

  • Summary:
    A dataset including over 2,100 questions received by the Epilepsy (Canada) PSP has been made openly available
  • Year:
    2022