We are excited to announce that the Rare Epilepsy Network (REN) Registry is open for enrollment! 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 Dup15q Alliance, and Columbia University, New York University and RTI International.
Dup15q Alliance is hoping to recruit at least 100 people with chromosome 15q11.2-13.1 duplication (dup15q) syndrome into the REN, and we need your help to make this happen. There are no exclusion criteria as long as the person affected by dup15q syndrome has had one or more seizures. If you are a parent or legal guardian of a person with dup15q syndrome, 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 dup15q 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.