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.

Giving disability a voice: Women with mobility disabilities discuss sexual health

Using story completion tasks, the aim of this research is to identify potential gaps in sexual health education aimed at individuals who have a mobility disability. Participants will be given a story about designing a sexual education curriculum that they must complete using their own experiences, ideas, and conceptions about what this should include. This survey is open to women aged 18 and over with a mobility disability, and will take around 20 minutes to complete. Click here to view the survey.

Please direct any questions to researcher Amanda Cooper-Eales.


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.