International Ion Channel Epilepsy Patient Registry

Sponsored by: Dravet Syndrome Foundation & Ion Channel Epilepsy Alliance

Primary Investigators:

Jack Parent, MD, Professor of Neurology, University of Michigan

Ian Miller, MD, Nicklaus Children's Hospital

What is the Registry?

The International Ion Channel Epilepsy Patient Registry (IICEPR) is a research project conducted under the auspices of the University of Michigan, Department of Neurology. The goal of the registry is to collect data via a questionnaire 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 for future research, registry participants will be contacted if they are eligible for future studies. However, participation in the registry does not obligate you to enroll in any of these studies.

Who Can Participate?

You or your child are eligible to participate if you have epilepsy caused by an ion channel mutation. Anyone should register 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, the following:

Features:

  • Febrile seizures starting before age 1 year
  • First seizure following immunization
  • Family history which includes febrile seizures and non-febrile seizures
  • Seizures that are increased by temperature change

Gene Mutations:

  • SCN1A
  • SCN1B
  • SCN2A
  • SCN8A
  • PCDH19


  • GABRD
  • GABRG2
  • KCNQ2
  • KCNQ3

How Can You Participate?

To participate in the registry, click the link below. Upon clicking the link, you will be directed to the REDCap secure web application where the registry is housed. You will need to read and agree to the web-based Informed Consent by selecting "I Agree" at the bottom of the form, and then you will need to click the "Next Page" button to begin the registry questionnaire. It may be helpful to have the following information ready before continuing:

  • Contact information
  • Birth date
  • Diagnosis
  • Symptoms
  • Genetic test results
  • Other information pertinent to this illness

Participation is voluntary and will not affect any medical decisions between you and your doctor. Parents/Guardians are encouraged to register their child if they meet eligibility criteria, even if they have passed away from any cause. You have the right to change your mind and may deactivate your information at any time. Deactivation means that your information will not be given to any new researchers. To deactivate, contact the Registry Coordinator listed at the bottom of this page.

How Secure is My Child's Information?

This Research Registry uses REDCap, an electronic data capture system that is a secure, HIPAA compliant, web-based system housed on the secure servers of the University of Michigan. Information you submit will be encrypted and all identifying and personal health information is accessible only to the registry staff at the University of Michigan.

Registry Coordinator:

Jamie Guyot, MSA, CCRP

Neuro-DravetRegistry@med.umich.edu

Mailing Address:

Department of Neurology

1500 E. Medical Center Drive

F2658A UH South

Ann Arbor, MI 48109

Telephone:

734-763-2374

Fax:

734-936-5520