Vascular Ehlers-Danlos syndrome (VEDS) is a rare genetically triggered disease that results in premature death and severe medical issues that significantly reduce a patient’s quality of life (QOL). The median survival is 51 years of age. Patients diagnosed with VEDS commonly suffer from weakness in the arteries, bowels, uterus, and skin, and they are at high risk for spontaneous rupture of these organs. Although VEDS is a catastrophic disease, lack of patient knowledge, lack of research in patient-centered therapy options, and misdiagnoses lead to reduced QOL. In collaboration with EDS Network C.A.R.E.S. Foundation, we propose the formation of a VEDS network focused on building a research agenda that will result in patient-centered, feasible, efficient, and meaningful care.
We seek to build a formal infrastructure for our stakeholder community (VEDS patients, caregivers, and clinicians) to advise research teams on the questions that matter most to patients. Our specific team-building tasks include hosting three virtual meetings focused on (1) creating a formal community (months 1–4) and developing communication strategies for stakeholder engagement using webinars, Twitter chats paired with Storify, and Google Hangouts (months 5–8); and (2) forming a governance structure (months 9–12). Through recent presentations at national meetings, I developed an informal partnership with the EDS Network C.A.R.E.S. Foundation to create a patient registry. PCORI’s Tier I program provides an opportunity to formalize this partnership and expand it to include other organizations, while building a community focused on engaging in research prioritization—the focus of our anticipated Tier 2 proposal submission.