The STRETCH Project: To Build Capacity Advancing Patient-centered Research in Ehlers-Danlos Syndrome

Project Summary The Ehlers-Danlos Syndromes (EDS) are a set of rare inheritable disorders of connective tissue characterized by a defect in collagen biosynthesis. Among the most notable features of EDS are joint laxity and skin hyperextensibility. This led to the name: STRETCH Project (Shared Team Research in Ehlers Danlos Syndromes Toward Comprehensive Health). As the project team has learned from its patient research advisory group, comorbidities profoundly influence the quality of patients' lives. The standard of care is to manage complex, overlapping symptoms and prevent joint and skin damage, but research is lacking to help determine which treatments work best and why. Penn State College of Medicine has an established, growing partnership with people with EDS that anchors the proposed project. The long-term STRETCH Project goal is to conduct patient-centered comparative effectiveness research through an established national network of research partnerships comprised of patients, clinicians, and other stakeholders who are trained to identify, prioritize, and engage in EDS research. In year 1, the team will develop STRETCH Project training materials and curriculum targeted for delivery to the initial clinician-patient research partnership site. By the end of year 2, the team will have established four additional sites across the country to build the capacity to train EDS research partners. The researchers will engage individuals with the different EDS syndromes and symptoms as patient partners in order to capture the range of patients' experiences. The team's prior experience has demonstrated that many patients are eager to contribute their knowledge, and providing training allows them to be more effective research partners. The project will include family caregivers as stakeholders as they have already been eager participants with valuable perspectives. A multidisciplinary clinician team will also be included in the STRETCH Project.