
REN Registry
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