Research Surveys

The Ehlers-Danlos Society posts any surveys here that have IRB approval to give the 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.


Health-Related Quality of Life Health Survey for People with Vascular Ehlers-Danlos Syndrome

Do you have vascular Ehlers-Danlos syndrome and are 18 years of age and older? Researchers from Sam Houston State University are inviting you to complete a health-related quality of life study. The information you give will be confidential and your IP address will not be tracked to identify participants. Please consider taking this survey as the researchers are looking for information that can influence funding to research vascular Ehlers-Danlos syndrome.

The survey should take about 20 minutes and will begin after the introduction and consent form.  Click here to begin. If you have any questions regarding the survey, please contact Daphne Fulton at dsfulton@shsu.edu.


Is the Spider a valid outcome measure for assessing anxiety and depression in children and adolescents with hypermobility? 

Are you a parent of a young person aged between 12-17 years or a young person aged 18 who has been diagnosed with symptomatic hypermobility, hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD)? If so, researchers at UCL Great Ormond Street Institute of Child Health really need your and/or your child’s help with the important development of a new screening tool to help guide treatment pathways and monitor change. The new tool is called The Spider because there are 8 different symptom domains (parts). The researchers are currently testing the anxiety and depression domains.

Below is a link to a questionnaire for you/your children to complete. Participants must be able to understand and communicate in English.  Researchers are looking for participants without other diagnoses such as inflammatory arthritis, a neurological condition such as cerebral palsy, or an unrelated joint or muscle injury. Those who are 18 can consent for themselves. Parents or guardians of children aged 12-17 need to click on the link and give consent. You need to open the link and consent, then have the children give their consent and fill in the questionnaire. The researchers are also seeking individuals without hypermobility to complete the questionnaire. You are invited to share this research survey with friends or family who do not have HSD or hEDS.

The questionnaire will take less than 15 minutes. All answers are anonymous and confidential. No personal identifying information is collected. Click here to begin.


Perspectives and Experiences of People with Hypermobile Ehlers-Danlos syndrome and Hypermobility Related Conditions in relation to Functioning, Disability and Management

***This study is for individuals in Australia.

Are you over 18, currently living in Australia, and have a formal diagnosis of hypermobile Ehlers-Danlos syndrome or Hypermobility Spectrum Disorder?

Researchers from Charles Sturt University are researching the impact and current management of hypermobility in Australia. They invite you to share your perspectives and experiences in relation to functioning, disability and management of your hypermobility in a 45-60 minute survey.

The survey will provide valuable insight into the challenges and opportunities people in Australia face with regard to hypermobility. This may highlight current needs and priorities, and reveal any gaps in clinical services in Australia to assist in understanding the extent of difficulties people face in everyday functioning, disability and management.

Further project information and the survey can be found here: https://csuedssurveyau.weebly.com


The Impacts of Shift Work on Chronic Conditions 

Researchers at Kent State University at Salem Department of Psychological Sciences are interested in how shift work impacts people with chronic conditions physiologically and cognitively. They are also interested in how chronic conditions impact people who are not shift workers. The survey will ask participants about their status as a shift worker and if they have a chronic condition and also includes questionnaires about general health, sleep quality, pain perception, and memory. This survey also has two timed memory tests at the end.

In order to participate, you must be over the age of 18 and speak English. You do not have to be a shift worker or have a chronic condition to participate. The survey is accessible on smartphones and will take 20-30 minutes to complete. Participation is voluntary and the survey can be stopped at any time. To complete the survey, click here. If you need any additional information or if you have questions or concerns, please contact rvolokho@kent.edu.


Connective Tissue Disorders, Correlates of Pain, Stress, and Management 

This study is seeking 20 female participants with Ehlers-Danlos syndrome (EDS).

The aim in this study to investigate whether female participants with EDS have higher stress levels than university female participants, if the pain has a correlation with the level of perceived stress, if EDS participants have a deficiency in essential nutrients, and to investigate the ways in how to manage the stress and pain in EDS individuals.

Participants will be required to answer one questionnaire including questions about demographics, perceived stress, depression, and pain. This questionnaire will not take more than 15 minutes. Participants will be given by a study number, so their data remains anonymous. Their names will only be used on the consent form. Consent forms will be kept securely for the length of time advised by the ethics board before being destroyed.

Click here to complete the survey.


Patient Experience-Based Information Systems Application for Mitigation of Genetic-Disorder Pain

Are you interested in finding ways to better manage your pain? Researchers at California State University, Sacramento are studying patient experiences with, and feelings about, pain management. This research is funded by Genentech and aims to address pain mitigation for genetic disorders patients through online community/social media tools.

For those interested, a summary of the result will be provided. The researchers appreciate your feedback on this important work, as results will help contribute to identifying ways to better use technology to build the support community for individuals dealing with Ehlers-Danlos syndrome (EDS).

The researchers are looking for individuals with chronic pain, who belong to any online support group, and have been diagnosed or suspected of having any type of Ehlers-Danlos syndrome. This is a qualitative study and will be done over the phone/Skype/Zoom. Based on the availability of the participant, a 15–20-minute interview will be scheduled. If you were interested to participate in this study, please email Sadaf.ashtari@csus.edu with the subject line of “EDS-related Interview” to receive the official recruitment flyer with the interview questions.