The Rare Epilepsy Network (REN) is an award from PCORI and part of a larger study that includes large medical care systems—clinical data research networks (CDRNs)—and smaller patient-centered systems—patient-powered research networks (PPRNs)—collectively called PCORnet. REN, a PPRN, is a collaboration among the Epilepsy Foundation, multiple organizations with research interest in rare epilepsies. Involvement in PCORnet allows us to work with others with PPRNs and CDRNS to answer similar questions.
The goal of REN is to build a patient/caregiver-centered database designed to increase research opportunities for patients and caregivers that will help improve the lives and quality of care for people with rare epilepsies. REN provides patients affected by a rare epilepsy and their families the opportunity to participate in studies that may facilitate observational studies, clinical trials, and comparative effectiveness research. REN decreases the barriers to including people with rare epilepsies in the research process.
The REN registry includes patient- or caregiver-reported data that address patient information, medical history, diagnosis, and treatment, as well as patient and caregiver quality of life data. REN will facilitate the conduct of patient-centered research, which means it will address research questions and topics that are important to patients and caregivers with the ultimate goal of having them be better able to participate in healthcare decisions. The registry will also create the infrastructure for future research.
Our data indicate that less than 5 percent of patients with rare epilepsies are able to report their own data in the REN database because of the cognitive disabilities so common among REN patients. Thus, in most cases, their caregivers will enter data on their behalf and will participate in this caregiver-oriented network. The advantage of intimate caregiver involvement is that we can also study the impact of the disorders on the health and well-being of the family.
REN’s steering committee includes researchers, clinicians, and caregivers of epilepsy patients. Our patient-centered research supports PCORnet’s mission to promote patient-centered outcomes and to disseminate best practice guidelines on a national scale. Our work is expected to greatly contribute to the little existing knowledge about rare epilepsies, and has the potential to greatly improve the quality of care for affected patients and families. Currently, REN is recruiting patients with 1 or more of 10 specific conditions. However, we are expanding the REN registry to most patients with other rare epilepsies. For eligibility criteria, please visit the REN website.
View more about this project on PCORnet.org.
^Janice M. Buelow, PhD, RN, was the original principal investigator for this project.