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.

Researchers at Macquarie University are in the formative evaluation stage of developing an online pain management program for individuals with hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorder (HSD), with primary aim to address their pain. They would like to collect opinions on what topics should be included in the program. To participate in the survey you must be one of the following:

  • A healthcare professional or researcher with at least 5 years treating or researching hEDS/HSD
  • An individual diagnosed with hEDS/HSD

To take part in the survey click here. If you have any questions or feedback regarding this survey, please contact researcher Min Tze Chew.


The University of Wisconsin- Madison Department of Surgery, Division of Otolaryngology is conducting a study examining voice problems in people with Ehlers Danlos Syndrome. Those aged 18 or over with EDS with and without voice problems are eligible to participate. This survey will take 15-30 minutes to complete.

If you are interested and think you may be eligible, click here to find out more information.


You are being invited to participate in a research study because you are 18 years or older and have been identified as having hypermobile Ehlers-Danlos syndrome (hEDS) or you are seeking a diagnosis of hEDS. This study aims to identify the health care needs of hEDS patients in order to determine if there is a role for genetic counselors in hEDS patient care. You can help by answering the questions in this anonymous survey, which should take you about 10 to 15 minutes.

You may be interested in participating in this survey to share your thoughts and experiences with receiving medical care for symptoms related to hEDS by asking questions about the helpfulness of different specialists. The survey asks questions about the different aspects of your medical care that you found most helpful and what you feel could further enrich your care. You can take the survey here.

If you have any questions regarding this survey, please contact researcher Sydney Lighty.



Researchers at UT Health MD Anderson Genetic Counseling Graduate Program are conducting a research survey which aims to describe the patient’s journey to diagnosis as well as the lived experience of these patients attempting to reach diagnosis. Due to the difficulty diagnosing the condition, many patients have struggled to obtain an official diagnosis of hEDS. By defining patient expectations for a clinical genetics appointment and understanding the patient’s lived experience with a diagnosis, providers can gain a better understanding of their patient’s journey and set expectations to increase patient care and satisfaction. 

You are invited to take part in this study if:

  • You are 18 years or older
  • You have a suspected or confirmed diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS)
  • You were diagnosed or receiving care in the United States

This survey will take 15-20 minutes to complete, should you have any questions please contact researcher Madeline Alpar. Click here to take the survey.


Are you an adult who has been diagnosed with Ehlers-Danlos syndrome (EDS)? If so, we want to hear from you!

A study team at Columbia University is investigating the diagnostic journey of people with Ehlers-Danlos syndrome. This survey study explores the diagnostic timeline, diagnostic process, and psychosocial effects of diagnosis. Researchers from Columbia University will use this data to describe and study factors impacting the diagnostic journey of EDS in order to shed light on the diagnostic process and improve it in the future.

The Columbia University Institutional Review Board has approved this survey. To participate, you must be at least 18 years old and diagnosed with Ehlers-Danlos Syndrome. Participation is completely voluntary, and responses will be anonymous. The survey takes about 15 minutes.

You are welcome to send this survey to friends or family members who you think might be eligible. Increased participation leads to better research!

Click here to take the survey. Should you have any comments or questions, please feel free to contact researcher Emma Mizrahi-Powell at 


Hypermobile Ehlers-Danlos Syndrome and Generalized Joint Hypermobility: Patient’s Perspectives on Success Criteria and Expectations for Treatment

This survey aims to assess treatment success and expectations for treatment in people with Hypermobile Ehlers-Danlos Syndrome and Generalized Hypermobility. This survey assesses pain, fatigue, emotional distress, interference with daily activities, and musculoskeletal concerns. Researchers from the University of South Florida expect to determine differences across areas of concern in the amount of change necessary for treatment to be deemed successful and establish the relationship between success criteria and expected outcomes. This survey will provide the criteria needed to optimize treatment interventions.

To participate, you must be 18 years old and diagnosed with Hypermobile Ehlers-Danlos Syndrome and Generalized Joint Hypermobility. The anonymous survey is available in English and Spanish and takes about 25 minutes. No personal information is collected. Compensation is available. Click here to begin.

Please direct any questions to ptstudy@usf.edu.


 
Characteristics of Sleep and Sleep Disorders in Individuals with Ehlers-Danlos Syndrome (EDS)

Researchers at the University of Tennessee are looking to examine the sleep patterns, sleep disturbances, and interventions used to improve sleep for individuals with EDS. The survey will take 10 minutes to complete, and the information you provide will be confidential and anonymous. Participants from around the world are welcome to complete the survey.

Click here to begin, if you have any questions regarding this survey, please contact David Levine at instrb@utc.edu.


Can The Spider accurately identify specific symptoms and measure the impact of these symptoms on a person’s life? 

Are you a parent of a young person aged between 13-17 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 yours 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). Four of these domains have already been successfully validated, and we are now aiming to validate the final four domains before publishing the tool. With this survey the researchers are testing the gastrointestinal, urogenital, neuromusculoskeletal and cardiac dysautonomia domains. The project has University College London ethics approval.

Do you/your child meet the following criteria?

  • Adolescent aged 13 to 18 either:
  • With symptomatic hypermobility (without another diagnosis such as inflammatory arthritis, a neurological condition such as cerebral palsy, or an unrelated joint or muscle injury).
  • Without symptomatic hypermobility – this may be siblings or friends of those with symptomatic hypermobility
  • Able to understand and communicate in English

Below is a link to a questionnaire for you/your children to complete. Parents or guardians of children aged 13-17 need to click on the link and give consent. Those who are 18 can consent for themselves. You need to open the link and consent, then have the children give their consent and fill in the questionnaire. It will take around 15 minutes, you can save your answers and return later, but please do return as incomplete data cannot be analyzed. All answers are anonymous and confidential. No personal identifying information is collected.

The researchers need hypermobile and non-hypermobile young people aged between 13 -18 to complete this so please send to friends for their children to do. Large numbers are needed for the best research!

Read more about this research survey in this PDF poster. Click here to begin.


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.