Data Sharing

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Originally, REN formed to develop a rare epilepsy registry. We have formed a Data Sharing Work Group to manage requests from industry, academia, researchers, PAGs, etc to use the existing REN data. REN has also created a Data Sharing Committee to review and approve these requests. Our committee also works with our members to promote our registry and explore various new registry opportunities.


Lead: Kathleen Farrell

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