During January 2018 we surveyed our patient members to gain feedback on how the charity is performing and any key areas of focus for the future.
74 surveys have been completed and the results of the survey has helped towards implementing our 3 year plan for vascular EDS with key actions to be delivered by 2021.
This survey is the part of the work being done by the Vascular Ehlers Danlos Syndrome (vEDS) Collaborative; a group of stakeholders working to increase patient engagement in vEDS research.
The Collaborative is supported in part by a $50,000 award to Dr. Sherene Shalhub at the University of Washington by the Patient-Centered Outcomes Research Institute (PCORI) to support a project on Vascular Ehlers-Danlos Syndrome.
Dr. Peter Byers (University of Washington) serves as an advisor to the vEDS Collaborative.
Patients with vEDS who are over 18 (or their caretakers) are eligible to participate from across the world.
If you are a caretaker of a patient with vEDS, please answer the questions on behalf of the patient.
All questions are optional, and all responses will be kept confidential.
This questionnaire has 25 questions and should take around 20 minutes to complete. It is only intended to signpost potential areas for further, more scientific research.
We all effectively own and can share the information from this survey, but all answers will be automatically anonymised. The plan is to identify quick research ‘wins’ in order to create more knowledge about vascular EDS.
This survey was created and managed by Sophie Leftley, a retired GP and public health doctor who was diagnosed with vascular EDS in 2013.
Proudly supporting the NHS EDS National Diagnostic Service