Presented at the Pacific Northwest Vascular Society Annual Meeting, Seattle, WA, on October 11, 2018 and in part at the fifth GenTAC Thoracic Aortic Disease Summit, Portland, OR, on October 7, 2018.
Patient-centered research requires active engagement of patients. The vascular Ehlers-Danlos Syndrome (vEDS) research collaborative was established to ascertain patient-centered vEDS research priorities and to engage affected individuals as research partners. Evaluation of access to information and interest in research among individuals with vEDS was the first step undertaken as part of this work.