PATIENT REGISTRIES

dsf-butterfly-purple_jpeg_version_transparent-e1425063447687The DSF Family Network is for US families and includes regional support groups and Parent Ambassadors. The purpose of these groups is to share local updates regarding doctors and therapy options, events & fundraisers, and to be able to share knowledge about the resources available in your region. DSF also hosts an annual Day of Dravet workshop in each region with educational seminars and meetups for families. The DSF Family Network is also 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.

Click here to join the DSF Family Network & Support Groups

iicepr

University of Michigan Department of Neurology & Nicklaus Children’s Hospital Brain Institute

Principal Investigators: Jack M. Parent, MD & Ian Miller, MD

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. Participants will be contacted directly by IICEPR should they qualify to participate in a clinical study

SUDEP Registries and Tissue Donation

When a patient with Dravet syndrome passes away from Sudden Unexplained Death in Epilepsy (SUDEP), their experience can help researchers learn more about this poorly understood tragedy. DSF encourages families to reach out to either of these SUDEP registries, which collect patient information and, when possible, tissue samples for research into the mechanisms of SUDEP and potential prevention measures. DSF applauds the AAN’s new SUDEP guidelines, while joining other advocacy organizations in urging expanded surveillance, research, and education.

Dr. Alica Goldman and her colleagues at The Department of Neurology at Baylor College of Medicine have established 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 collect blood and/or tissue samples from individuals who have passed away as a result of a seizure disorder.

Learn more about this program here.

Below are links to brief videos that help explain the tissue donation process:

Tissue donation is a very special gift, but is one about which you may have more questions. We seek to answer some of those questions with this FAQ:

STOP SUDEP Frequently Asked Questions

To register for tissue donation, contact Dr. Alica Goldman

The North American SUDEP Registry (NASR) seeks to help identify risk factors and mechanisms leading to sudden unexpected death in people with epilepsy (SUDEP). The registry collects DNA, brain tissue, and clinical data (e.g., medical records, EEG) for scientific studies about the causes of SUDEP. NASR collects information on cases of SUDEP regardless of how long ago the registrant may have passed away. Even though NASR may not be able to collect brain or DNA samples for older cases, tissue from older surgeries, MRIs, EEGs, and other clinical information have proven incredibly useful.

NASR is a highly collaborative organization with representation from many lay organizations (Epilepsy Foundation, CURE, Danny Did, Dravet EU, etc.) and more than 15 international academic institutions. NASR is the largest and most collaborative SUDEP registries with more than 3 full-time employees and a detailed methodology for SUDEP determination and adjudication by several epileptologists. NASR has enrolled more than 250 SUDEP cases and has brain and/or biospecimens from more than 120 SUDEP cases. A guiding principle of NASR is that clinical data and biospecimens will be shared with scientific colleagues. Learn more about this program here.

NASR has a research study on Dravet Syndrome SUDEP cases which includes a collaboration with DSF and Dravet Europe, as well as clinician scientists in Canada (Dr. Elizabeth Donner), Australia (Dr. Ingrid Scheffer), and England (Dr. Sanjay Sisodiya) and multiple US sites. The goal is to create the largest dataset on clinical, genetic and biospecimens from Dravet SUDEPs to advance our understanding and help to prevent SUDEP.

For immediate response regarding NASR tissue donations please call the toll-free number , available 24hrs/7days. For any other questions, comments or suggestions regarding NASR or SUDEP, or to schedule a telephone interview, please email the study coordinators at info@sudep-registry.org. Third parties are welcome to contact NASR with families’ information for referral, but any emails must explicitly state that the family member is aware of NASR and consents to have his/her contact information forwarded to NASR.

The principal investigator for NASR is Dr. Orrin Devinsky, director of the NYU Comprehensive Epilepsy Center. Dr. Devinsky is a leader in SUDEP research and cares for numerous Dravet patients. He can be reached at or via email at od4@nyu.edu.

NASR Frequently Asked Questions