Data Export Requests for Research
Seizure Tracker population exports are typically created for institutionally based researchers having internal review board oversite. All user data is de-identified and unlinked.
- Contact Seizure Tracker
- Complete/Submit data acquisition request form
- Request reviewed (usually under 2 weeks)
- Data Share Agreement developed/reviewed/signed
- Data transferred
As the Seizure Tracker database grows, our users understand the potential it has to help understand the natural history of seizures and epilepsy. As part of a 2014 survey, our users overwhelming voiced their interest in participating in research. We took that as a mandate to build a comprehensive data export tool that ensured their privacy.
Users control their participation!
There is an opt-out setting for research participation in the users account settings page.
There is a growing research community using the Seizure Tracker data to anwser previously elusive questions about the natural history and characteristics of Epilepsy.
Out continued involvement in the International Seizure Diary Consortium has provided a system for supporting researchers entering into using patient reported big data.
Seizure Tracker export recipients can expect access to a range of support provided by other research community members.