COVID-19-Related Project Enhancement
The enhancement leverages existing engagement infrastructure to address ways to alleviate the burden of COVID-19, as well as reducing the risk of morbidity, in the vulnerable Ehlers-Danlos Syndromes (EDS) population.
The additional work is expected to significantly benefit people with EDS and provide a replicable model to expand capacity for patient-centered outcomes research and comparative clinical effectiveness research in other rare disease communities. Deliverables include reports describing research questions generated and the clinical practice implications that emerge from discussions with patients, clinicians, and other healthcare stakeholders.
Enhancement Award Amount: $101,700
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.
Project Resource: COVID-19 Session Information Part One
Project Resource: COVID-19 Session Information Part Two
Project Resource: COVID-19 Session Information Part Three