The University of Washington and FightEDS ask patients to set the research agenda
January 31, 2018
The Vascular Ehlers-Danlos Syndrome Collaborative Survey
As many of you are aware, FightEDS has been working closely with the University of Washington on furthering education and research in vascular EDS. Most recently, we have collaborated with Dr. Sherene Shalhub and Dr. Peter Byers of UW on the Vascular Ehlers-Danlos Collaborative via the Patient-Centered Outcomes Research Institute (PCORI) research grant. This is a $50,000 grant aimed at bringing key members of the medical community (physicians and researchers) together with active members of the vascular EDS community (FightEDS, Ryan's Challenge, EDS Today and others). The project aims to identify the most important research priorities of the vEDS community and pursue these projects accordingly.
The next step in the project is an exciting one—and it is where you can help! Follow this link and fill out the survey for vascular Ehlers-Danlos syndrome patients. It is an anonymous and confidential survey meant for patients with a diagnosis of vascular EDS. The goal of the survey is to get a better understanding of the vEDS community and what our needs are. From there, the PCORI team will determine the next steps in terms of what are the most important research items to pursue next in vascular EDS.
You can help make this a success by participating in the survey yourself and by spreading awareness to other members of the vEDS community. Share the link with other vEDS patients you know, or on vEDS message boards such as Inspire.com and Facebook. The more patients we have participate in the study the more we will learn! If you have any questions about the survey please feel free to contact us. We look forward to pushing vascular EDS research further, bringing our community closer together, and getting one step closer to finding new treatments for vEDS patients.