International Ion Channel Epilepsy Patient Registry
WHAT’S THE PURPOSE OF THIS REGISTRY?
The International Ion Channel Epilepsy Patient Registry is a collaborative research project by the University of Michigan Department of Neurology and the Miami Children’s Hospital Brain Institute. The goal of the registry is to collect data on as many patients as possible to make future research into specific symptoms, causes, and treatments easier to perform. By defining a large pool of affected individuals, future research can be performed more quickly and efficiently. Because the purpose of the registry is future research, registry participants may be contacted if they are eligible for future studies.
Funding for the Registry will be provided by the Dravet Syndrome Foundation and Ion Channel Epilepsy Alliance over the life of the project.
HOW DOES IT WORK?
You will be asked to complete a short questionare and to submit genitc test results at www.iicepr.org
The Research Coordinator, based at the University of Michigan Department of neurology, will verify your ion channel mutation results with the lab that performed the test. Participation in the Registry does not obligate you to enroll in clinical trials; however, you will be notified of clinical trial opportunities.
HOW SECURE IS MY CHILD’S INFORMATION?
Your child’s data will be hosed on a secure computer system. Submitted information will be encrypted. Any indirect use by future researches will require your permission, after they tell you how they indent to use the data.
DO I NEED TO SIGN UP BY A SPECIFIC DATE?
The registry does not have a planned end date, so you may choose to sign up at any time. However, the more participants that are involved, the more useful the resource will be to researches.. You have the right to change your mind, and may deactivate your child’s information at any time. Deactivation means that your information will not be given to any new researchers.
WHO SHOULD REGISTER?
- Anyone who has epilepsy with one or more of the following features and/or an identified gene mutation affecting ion channel function (including but not limited to SCN1a, SCN 1b, SCN2a, GABRD, GABRG2, or PCDH19)
- Febrile seizures starting before age 1 year
- First seizure following immunization
- Family history which includes febrile seizures and nonfebrile seizures
- Seizures that are increased by temperature change
- Parents/Guardians should register their child if they met the eligibility criteria but have passed away from any cause.