International Ion Channel Registry

What is the purpose of this 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.

*Please watch this website for more information about the launch of this registry!