Rare Epilepsy Network

Established in 2013, the REN registry was a comprehensive database designed to collect and organize information about people with rare epilepsies, made possible through a $3M grant from the Patient-Centered Outcomes Research Institute (PCORI). The registry includes data on over 1,459 patients spanning 40 distinct rare epilepsy disorders. The data includes comorbidities, developmental milestones, seizure medications and side effects, seizure history, and more. The REN registry interactive dashboard reflects some of the patient and caregiver data collected.

The registry closed in 2018 but is accessible through the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) portal. The platform includes not only REN data but also information on over 34 diseases, including Angelman Syndrome, CACNA1A, hnRNP, KIF1A, Kleefstra, LGS, Prader-Willi, Sturge-Weber, Tuberous Sclerosis, that overlap with rare epilepsy.​​​​​​​​

The REN registry also led to the publication of several critical studies:

• Comorbidities of Rare Epilepsies: Results from the Rare Epilepsy Network – explores the health conditions that often accompany rare epilepsies.
• Factors Associated with Caregiver Sleep Quality Related to Children with Rare Epilepsy Syndromes – examines the impact of rare epilepsy on caregiver well-being.
• Risk Factors For Pneumonia In Rare Epilepsy Syndromes – identifies factors contributing to pneumonia risk in rare epilepsies.
• Raring for Change: Confluence of scientific discovery and advocate alignment warrants vital new investments in The Epilepsies - landscapes the explosion of rare epilepsy organizations and advocates for investments in their infrastructure, programs, and initiatives.
  • Rare Epilepsy Landscape Analysis and Appendix