Participate in Research

Are you interested in having your family member with Dravet syndrome or a related ion channel epilepsy participate in research studies? These studies might range from an online survey or phone interview to blood tests and other medical procedures.

 

Dravet Syndrome Foundation feels strongly that research is our best hope for advancing treatments and eventually finding a cure for Dravet syndrome and associated epilepsies. DSF supports and endorses three registries and highly encourages families to join all three registries.

 

Below are detailed descriptions of all the registries, including links to enroll.

 

IICEPR (International Ion Channel Patient Registry) Clinical Registry
University of Michigan Department of Neurology & Miami Children’s Hospital Brain Institute
Principal Investigators: Jack M. Parent, MD & Ian Miller, MD
Funded by DSF & ICE Alliance

 

IICEPR is the only clinical registry for ion channel epilepsy patients where medical information and genetic test results are collected and stored in a standardized and secure way by medical professionals. This tool is available to all researchers for use in research & clinical studies.

 

IICEPR is the only clinical registry for ion channel epilepsy patients where medical information and genetic test results are collected and stored in a standardized and secure way by medical professionals. This tool is available to all researchers for use in basic science and clinical research studies.

 

To join the IICEPR, click here. Participants will be contacted directly by IICEPR should they qualify to participate in a clinical study

 

Dravet Syndrome Foundation Contact Registry
DSF Contact Registry is a communication tool that will provide you with the most up-to-date information about research projects and clinical trials that are available for participation. Patients and their families enrolled in this contact registry will receive periodic research updates about Dravet syndrome and related epilepsies, including notification of any studies for which you are eligible to participate. Your information will not be shared without your permission; the Registry is simply a tool for communication about research opportunities.

 

To join DSF Contact Registry, click here

 

SUDEP Tissue Bank Registry
DSF supports Dr. Alica Goldman and her colleagues at The Department of Neurology at Baylor College of Medicine in their establishment of a seizure disorder tissue bank, the SUDEP Tissue Donation Program (STOP SUDEP). This project is funded by The National Institutes of Health (NIH)/The National Institute for Neurological Disorders and Strokes (NINDS). Investigators are collecting blood and/or tissue samples from individuals who have passed away as a result of a seizure disorder.

 

To register for tissue donation, contact Dr. Alica Goldman