two girls one sitting in wheelchair from rare epilepsy

Access the Rare Epilepsy Network Registry: Data for 1,459 Patients Across 40 Diagnoses

To expedite research into the rare epilepsies, 32 rare epilepsy organizations have joined forces with the Epilepsy Foundation, Research Triangle Institute, and Columbia University to create the first ever Rare Epilepsy Network (REN) Registry.

  • A registry is information about people with a certain condition to support and encourage research into that condition.
  • The information people provide is stored in a secure database; information is given to researchers without names or identifying information of participants.
Rare Epilepsy Network (REN)

With seed funding from the Patient-Centered Outcomes Research Institute (PCORI), the REN patient registry collected information about people living with rare epilepsies to better understand these conditions, improve treatments, and improve the lives and quality of care of people living with them.

The REN registry interactive dashboard reflects some of the patient and caregiver data collected between 2014 and 2018 from 1,459 participants across 40 rare epilepsy diagnoses. [Note: This website works best when used with Google Chrome as your browser.]

Epilepsy Foundation maintains the REN registry on Prometheus platform and manages requests for data in partnership with a Data Usage Committee comprised of both Epilepsy Foundation staff and volunteer members of the Rare Epilepsy Network.

welcome screen of the rare epilepsy network

Request Access to the REN Registry Data Today!

Researchers, clinicians, government, industry and patient advocacy groups can request access to the registry.

To request data visit Proposal Central:

  • Find instructions for using Proposal Central.
  • On Proposal Central, you will download, complete and return the REN Registry Data Transfer Request (DTR).
  • Requests are received and reviewed by a Data Sharing Committee.
  • If your proposal is accepted, you will be required to complete a Data Use Agreement.
  • For questions concerning access to REN registry, please contact rare@efa.org.

Learn More About the Rare Epilepsy Landscape

To better understand the explosion in rare epilepsy diagnoses and organizations, Epilepsy Foundation commissioned an analysis of the Rare Epilepsy Landscape (RELA). This first-of-its-kind comprehensive survey of rare epilepsy organizations includes information about 44 rare epilepsy organizations' founding, mission, staffing, infrastructure, funding, and more. The RELA identifies many shared challenges, as well as opportunities for collaboration around research, information, support, professional education, and advocacy.

homescreen of the rare epilepsy network ren site

Epilepsy Foundation Supports the Rare Epilepsy Network (REN)

Originally founded as a single project focused on a registry, the Rare Epilepsy Network has evolved into a consortium including over 60 members and partners all committed to improving the lives and care of patients living with rare diagnoses through research. Epilepsy Foundation is a proud member of the Rare Epilepsy Network alongside other epilepsy stakeholders.

Reviewed By: 
Epilepsy Foundation Research
on: 
Friday, October 23, 2020