Twenty-one rare epilepsy organizations have joined forces with the Epilepsy Foundation, Research Triangle Institute, Columbia University and New York University to create the first Rare Epilepsy Network.

REN is a patient registry created to collect information about rare epilepsy patients to better understand these conditions, improve treatments and improve the lives and quality of care of patients living with them. Similar to the Phelan-McDermid Syndrome International Registry (PMSIR), the REN Registry is voluntary, anonymous and all data is kept in a secure database.

Participation involves creating an account and completing 12 questionnaires, each only takes between two and 10 minutes at most. Periodically, you may be asked to update your information. The REN Registry has more detailed questions about seizures than the PMSIR does, so not only is it worth participating in both, but you can also choose to have your REN information shared with the PMSIR.

Patients are eligible for the REN Registry if they meet all of these criteria:

• 1. Have a diagnosis by a physician of a rare syndrome or disorder that is related to epilepsy or seizures (for example, has PMS)
• 2. 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.”
• 3. Is either at least 18 years old and can consent for themselves or a patient of any age that is not a ward of the state and has a parent or legal guardian that can consent on their behalf.

As a bonus, every Friday in September, the Epilepsy Foundation will be randomly selecting five participants who completed the REN survey since enrollment began to receive a $100 Amazon gift card.

To learn more about this research opportunity and to enroll, go to https://ren.rti.org/. If you have questions about how the PMSF or PMSIR are involved with the REN Registry, email Rebecca at coordinator@pmsiregistry.org.