ASD-Related Networks: The Rare Epilepsy Network
Patient-Centered research is now will improve the quality and relevance of research for those it is meant to serve. While most national research organizations have tried to incorporate a patient- or participant-centered approach, the Patient-Centered Outcomes Research Institute is focused on research and outcomes that matter to patients. PCORnet is a national patient-centered research network of databases of patient-driven data. At the very core of PCORnet—and the differentiating factor between PCORnet and other data bases—is the patient. PCORnet has the potential to change the way research is conducted. The Rare Epilepsy Network is one such database that is driven by and for patients or their caregivers. Autism is known to be a comorbid condition in epilepsy.
Objectives: This panel is aimed at 1: Informing participants about patient-centered research and related national initiatives; 2. Discussing and demonstrating current rare epilepsy participant-centered programs and research; 3. Discussing synergy between patient-centered research networks; and 4. Discussing opportunities and challenges for integration of patient-centered and clinic/hospital-centered outcomes