Research Surveys

The Ehlers-Danlos Society posts any surveys here that have IRB approval to give our community the opportunity to take part in research. By posting these survey opportunities this does not serve as an endorsement of the research taking place.


Top Priorities for Patients with Syndromic Hypermobility- Study for Hypermobile Patients

You are invited to participate in a study conducted by researchers at the University of Sydney. The research study aims to explore the management priorities for patients living with diagnosed or suspected hypermobile Ehlers-Danlos Syndrome (hEDS). The results of the study may help to improve the understanding, awareness, management and ongoing care of hEDS and hypermobile patients in various medical and health professions. When you complete the survey, you will be offered the chance to enter a draw to win one of five $25 gift vouchers to thank you for your time.

Individuals are invited to participate if they are between the ages of 18-65 and have a medical diagnosis or are suspected of having hypermobile Ehlers-Danlos Syndrome (hEDS) or syndromic hypermobility (patients with HSD, JHS, hEDS or suspected hEDS can also participate). Individuals with new pain symptoms that started after either cancer treatment or surgery in the past six months are ineligible to participate. 

Complete the survey here

45-70 minute online survey (you can take breaks and continue another day/time)


Top Priorities for Patients with Syndromic Hypermobility- Study for hEDS Clinicians

You are invited to participate in a study conducted by researchers at the University of Sydney. The research study aims to explore the management priorities for patients living with diagnosed or suspected hypermobile Ehlers-Danlos Syndrome (hEDS). The results of the study may help to improve the understanding, awareness, management and ongoing care of hEDS and hypermobile patients in various medical and health professions. 

Individuals are invited to participate if they are a medical or health professional that diagnoses and/or treats patients suspected of hypermobile Ehlers-Danlos Syndrome (hEDS), or syndromic hypermobility (patients with HSD, JHS, hEDS or suspected hEDS can also participate). If you have not worked with these patients in the past twelve months, you are ineligible to participate in this study. 

Complete the survey here.

 10-15 minute online survey


A PCORI Eugene Washington Engagement Award, the Type B Aortic Dissection Collaborative, is looking for patients with Type B Aortic Dissection to take a survey on research, healthcare, and to share their experiences.

This confidential survey is meant for patients with a diagnosis of Type B Aortic Dissection (TBAD). The goal of the survey is to get a better understanding of the TBAD community and what our needs are. This survey was developed by the TBAD Collaborative, which is a project bringing together patients, researchers, doctors, and other members of the TBAD community as partners in patient-centered outcomes research.
 
The Collaborative is building research infrastructure to facilitate patient-centered outcomes research training, support, and networking among patients with TBAD, vascular surgeons, cardiac surgeons, cardiologists, research consortia dedicated to aortic dissection, industry stakeholders, and patient advocacy groups. The project is led by Dr. Sherene Shalhub and Dr. Peter Byers from the University of Washington, and an Advisory Group of patients and family members of those affected by aortic dissection.

 

Complete the survey here.