About Our Dashboard

REN was originally formed/created to develop a rare epilepsy registry. With seed funding from the Patient-Centered Outcomes Research Institute (PCORI), the REN patient registry collected information about people living with rare epilepsies, such as medications, comorbidities, and seizure therapy, to better understand these conditions and improve treatment, lives, and quality of care for people living with them.

Contact

Lead: Kathleen Farrell

EF, kfarrell@efa.org

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Data Sharing Committee:

Megan O’Boyle, PMSF
Brandy Fureman, EF
Steve Roberds, TSC Alliance
Vanessa Vogel-Farley, Dup15q
Ilene Miller, REN

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.