ICE and DSF Fund the International Ion Channel Epilepsy Patient Registry
The International Ion Channel Epilepsy Patient Registry is a collaborative effort by the University of Michigan Department of Neurology and the Brain Institute at Miami Children’s Hospital to collect information from patients with ion channel epilepsies, beginning with Dravet syndrome (SMEI)* and related ion channel epilepsies (such as GEFS+, ICE-GTC, EMRF, or SMEB)*. The aim of the Registry is to collect data on as many patients as possible that will be analyzed by researchers and doctors around the world so they can better understand the Dravet syndrome spectrum and accelerate research. The Registry will also serve as a resource for researchers looking for patients who meet the criteria for clinical trials, and Registry participants will be contacted if eligible for enrollment. Funding for the Registry will be provided by the Dravet Syndrome Foundation and Ion Channel Epilepsy (Intractable Childhood Epilepsy) Alliance over the life of the project. The registry will cost about $20,000 initially and $15,000 per year thereafter.