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.
Started in 2017* by Dr. Sherene Shalhub of University of Washington, the vEDS Collaborative aims to our efforts to unite patients, caregivers, family members, and care providers in designing and advancing vEDS research questions.
Engagement of stakeholders (patients, clinicians, payers, employers, policy-makers, researchers) must be a core component of future research related to clinical research on Vascular Ehlers-Danlos Syndrome (vEDS). The vEDS Collaborative aims to build the infrastructure necessary for researchers to recruit and sustain partnerships with patients and other stakeholders that will inform their research work.
Stakeholder engagement via the vEDS Collaborative will provide an opportunity to keep stakeholders informed of our progress, assess the current state of existing networks and research infrastructures, obtain input on research priorities, and understand how to best present this evidence to effectively inform decision-making.
*Funding acknowledgement: initial funding for the vEDS Collaborative was provided by a Pipeline-to-Proposal Award (Tier A) from the Patient-Centered Outcomes Research Institute.