Setting a research agenda for vascular Ehlers-Danlos syndrome using a patient and stakeholder engagement model

ObjectiveVascular Ehlers-Danlos syndrome (vEDS) is a rare, syndromic, heritable condition with life-threatening complications that include aortic and arterial aneurysms, dissection, and rupture. This study describes the formation of the vEDS Research Collaborative and methods used for stakeholder engagement.MethodsThe vEDS Research Collaborative was established with an engagement award from the Patient-Centered Outcomes Research Institute to...