Rare Epilepsy Network (REN) Registry is Now OPEN for Enrollment

Published on: October 24th, 2014, by webmaster

Help us reach our enrollment target!
To Enroll Today, Click HERE!

The Aicardi Syndrome Foundation is asking all families to please take time to enroll in the Rare Epilepsy Network (REN). This is a very important research study that the Aicardi Syndrome Foundation is participating in with the Epilepsy Foundation. We have committed to enrolling a large number of families and we are still below our target. The Epilepsy Foundation will be applying for another 3 year contract with PCORI to continue the REN and we want to be sure we are included. Please help us meet our enrollment target by signing up today and completing the 45 minute survey which is broken up into sections that you may complete over several days. No medical records are required. You will be asked if you have EEG or MRI reports that can be uploaded at a later date. The REN will provide us with much needed data to better understand Aicardi syndrome, treatment, outcomes and quality of life.

The REN is a patient-powered and patient-centered research network that will expedite research into the rare epilepsies. The REN is led by the Epilepsy Foundation in partnership with 10 rare epilepsy organizations, including the Aicardi Syndrome Foundation, Columbia University, New York University and RTI International.

The Aicardi Syndrome Foundation is hoping to recruit at least 120 people with Aicardi syndrome into the REN, and we need your help to make this happen. There are no exclusion criteria as long as the affected person has one of the 10 qualifying rare epilepsies which include Aicardi syndrome, Lennox-Gastaut syndrome (LGS), Dravet syndrome, Dup15q syndrome, Ohtahara syndrome, CDKL5 or PCDH19 mutations, hypothalamic hamartoma, Phelan McDermid syndrome, or tuberous sclerosis. If you are a parent or legal guardian of a person with one of these conditions, please consider participation in this important research project.

Enrollment in the Registry is simple. You will be asked to fill out a survey about the child/affected person with Aicardi syndrome 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.

To learn more about the Registry or to begin the enrollment process, please visit the REN website at http://REN.rti.org.


CLICK to view the REN REGISTRY pdf