International Dravet Syndrome/Ion Channel Patient Registry (IICEPR)
This registry (co-funded by DSF & ICE Alliance) is owned and maintained by the University of Michigan and Miami Children’s Hospital Brain Institute, but is available to all interested researchers. Basic information and genetic test results will be collected on individuals with Dravet syndrome and related epilepsies, worldwide. The registry follows guidelines approved by the Institutional Review Boards of both the University of Michigan and Miami Children’s Hospital Brain Institute, as set forth by the U.S. Department of Health and Human Services. The establishment of this registry will expedite future clinical trials and will serve to improve communication of ideas amongst interested researchers, as well as assure rapid distribution of any new information that may benefit patients and their families.