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.

 

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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

 

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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

 

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Rare Epilepsy Network (REN) Registry

The Rare Epilepsy Network, or REN for short, is a collaboration between the Epilepsy Foundation, the IFCR, RTI international, Columbia University, Dravet Syndrome Foundation and many different organizations that represent patients with a rare syndrome or disorder that is associated with epilepsy or seizures. The REN will establish a registry of these patients which includes patient or caregiver-reported data in order to conduct patient-centered research. This research will be in the form of natural history studies and completion of surveys. The registry will also create the infrastructure for future research such as clinical trials. All of the research will be patient-centered, which means it will address research questions and topics that are important to the patients and caregivers with the ultimate goal of having patients and caregivers better able to participate in healthcare decisions. You may stop participating in the research at any time.

 

What Do We Mean by “Rare Epilepsy”?

In the world of neurology, “rare epilepsy” is a disorder or syndrome that is defined by a particular type of seizure. For example, Dravet syndrome is also known as Severe Myoclonic Epilepsy of Infancy. For the purposes of the Rare Epilepsy Network, we are including in the definition of rare epilepsy any disorder that is rare and that is also associated with seizures or epilepsy in the majority of patients. We are also using the term epilepsy to mean the same thing as having seizures or a history of seizures.

 

Who is Eligible for the Registry?

Patients who are eligible for the REN Registry must have a diagnosis by a physician of one of the following conditions:

  • CDKL5 Disorder
  • Aicardi Syndrome
  • Tuberous Sclerosis Complex
  • Dravet Syndrome (SMEI)
  • Dup15q Syndrome
  • Hypothalamic Hamartoma
  • Lennox-Gastaut Syndrome
  • Ohtahara Syndrome
  • PCDH19 Female Epilepsy
  • Phelan-McDermid Syndrome

Eligible patients must also have had at least one seizure in their lifetime that was not caused by a fever or the direct result of a head injury. We call these types of seizures “unprovoked”. The IFCR is hoping to recruit at least 80 people with CDKL5 Disorder into the REN.

 

What Do I Need to Do to Participate?

Enrollment is easy! There are 3 steps to enrolling in the REN Registry.

  1. You will need to read a consent form and acknowledge that you understand what it says and you would like to participate. If you have any questions, you may send us an email or call us before you agree to participate.
  2. You will need to enter in your contact information and some information about the affected person which allows us to create a global unique identifier and to be able to contact you in the future about the Registry.
  3. You will need to complete an enrollment survey which asks questions about the affected person with CDKL5 Disorder which asks about their diagnosis, seizures, treatment, development and medical history. There is also a section that asks about your quality of life and the impact that epilepsy has had on your family. The more information you provide in completing the questions, the more valuable your data will be for research. If you have a list of seizure drugs that were EVER taken, this may help you in completing the section about treatment.

The survey can be completed all at once or in sections.

 

How Much Time will it Take to Participate?

Reading and signing the consent and filling out your contact information will take about 5-10 minutes. The entire enrollment survey will take about 45 minutes to complete but does not have to be completed all at once. It is divided up into sections. A few times a year we will send you an email asking you to complete a follow-up survey.

 

How Can I Learn More and Enroll in the Registry?

You may learn more about the Registry and enroll by logging on to the study website

 

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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