Looking for Data for Rare Epilepsies?
Updated: Jan 19, 2021
To expedite research into the rare epilepsies, 32 rare epilepsy organizations joined forces with the Epilepsy Foundation (EF), Research Triangle Institute (RTI), and Columbia University to create the first ever 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 41 rare epilepsy conditions to better understand these conditions, improve treatments, and improve the lives and quality of care of people living with them.
A registry gathers and keeps 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.
The REN interactive dashboard reflects some of the patient and caregiver data collected between 2014 and 2018 from 1,459 participants.
Visit the REN Dashboard here to access this insightful data about seizures history, seizure medications, side effects, comorbidities, and developmental milestones.
For patients and caregivers - learn more about your disease across patients and their lived experiences.
For advocacy organizations - compare your disease to others and find diseases that share common attributes.
For researchers - request access to use this data in studies and research here.Instructions for using Proposal Central are here.
For questions concerning the Rare Epilepsy Network registry, contact firstname.lastname@example.org or 888-886-3745.