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.


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.


Voice, swallowing and acid reflux in Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders

The researchers are inviting individuals, who are over the age of 18 and living with either EDS or HSD to participate in a survey researching voice, swallowing, and reflux. 

The purpose of this research is to explore the frequency and severity of voice difficulties, swallowing difficulties, and acid reflux in people with Ehlers-Danlos Syndrome (EDS) and Hypermobile Spectrum Disorder (HSD). The study will explore whether there is a relationship between types of EDS/HSD and symptoms in the throat.

The survey will take approximately 15-30 minutes to complete and can be completed in more than one session. To complete the survey, click here.


Obstetric and Gynecologic Experience of Women with Ehlers-Danlos Syndrome

*** The community has provided valuable feedback for this study regarding the exclusionary language towards trans individuals. We have shared this with the researchers and will re-share the survey once we are confident these concerns have been addressed.

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

You are invited to participate in a study conducted by researchers at California State University, Sacramento. The research study aims to measure patient experiences with, and feelings about, pain management through social media. For those interested, a summary of the result will be provided. The researchers appreciate your feedback on this important work. Results will help contribute to identifying ways to better use technology to build the support community for individuals dealing with Ehlers-Danlos Syndrome (EDS).

Individuals are invited to participate if they have a medical diagnosis or are suspected of having any types of Ehlers-Danlos Syndrome (EDS) with chronic pain and are a member of any online support group. When you complete the survey, you will be offered the chance to enter a draw to win one of ten $30 Amazon e-gift vouchers as a thank you for your time.

Complete the survey here.

10-15 minute online survey (you can take breaks and continue another day/time)


EDS Food Access and Dietary Changes Survey, exploring how the Covid-19 pandemic has impacted ability to access food and dietary changes as a result of the pandemic.

You are being invited to volunteer to participate in a research study conducted by researchers at Penn State University College of Medicine. The aim of this study is to gather information from people with Ehlers-Danlos syndromes to understand how the COVID pandemic has impacted their ability to access food and the dietary changes as a result of the pandemic. The study involves completion of an online survey questionnaire about access to food and dietary practices pre-pandemic and currently. The questionnaire takes approximately 20-30 minutes to complete. The Summary Explanation of Research can be found on the survey link below.

Please contact the researcher if you have questions
Jane R. Schubart PhD
Penn State College of Medicine
Hershey, PA (USA)
E-mail: jschubart@pennstatehealth.psu.edu

Complete the survey here

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