Research Surveys

The Ehlers-Danlos Society posts any surveys here that have IRB approva,l 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.

Experiences of childbearing and maternity care among women with hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

Researchers at Coventry University are conducting this research and Dr. Gemma Pearce is the Principal Investigator.

For more information and to participate: http://bit.ly/EDSMothersSurvey


Maternity staff’s experiences and understanding of hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder

Researchers at Coventry University are conducting this research and Dr. Gemma Pearce is the Principal Investigator.

For more information and to participate: http://bit.ly/EDSMaternityStaffSurvey


The Relationship Between Attitudes and Quality of Life in People with Chronic Pain

Clarkson University, Leslie Russek

Researchers at Clarkson University are seeking people with chronic pain (pain on most days for more than 3 months) to participate in research looking at whether attitudes about chronic pain affect quality of life and function in people with chronic pain. Participants will answer about 30 minutes of questions online via SurveyMonkey. Your answers will all be anonymous. The questionnaires utilized in this study pose no more risk than questionnaires typically completed for healthcare providers. You must be >18 years old, able to read and respond in English, and have chronic pain. This project is approved by the Clarkson University IRB: proposal 19-43, approved until 3/9/20.

https://www.surveymonkey.com/r/M63GHXH


Nutrition and Health Survey of Australian Adults with Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders

This survey will help us to understand the eating habits, attitudes and behaviours of Australian adults with Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD).  Nutrition is the basis of our body’s health, so we must understand how nutrition affects people with EDS and HSD.  In addition, we need to understand how the comorbidities (other conditions) associated with EDS and HSD affect an individual’s dietary requirements.  Currently, no specific strategies are available to manage nutrition for people with EDS and HSD, particularly their dietary needs and capabilities.  By completing this survey, you will help us to gather information that can be used to develop nutritional strategies for Australian adults with EDS and HSD, which in turn will help many people with these clinical conditions around the world.

For more information and to participate: https://www.surveymonkey.com/r/KXZ5BYK

 


Pilates: Strengthen Your Hypermobile Core

This study is asking whether an on-line Pilates course “Strengthen Your Hypermobile Core” can benefit people with hEDS/HSD. Participants will complete 30-45 minutes of on-line questionnaires asking about pain, function, and quality of life. Participants will then be given (free) access to the on-line Pilates course, which includes 5 modules that each last about 25 minutes; the goal is to do 3 modules per week for 8 weeks. These Pilates exercises are slow, gentle movements that focus on body awareness, breathing, slow controlled movement, and relaxation. Participants will repeat the questionnaires after 8 weeks of doing the Pilates, and again 6 months later. You may omit any exercise or movement that causes discomfort and should not do anything that you feel is not safe for you.

For more information and to participate visit https://www.surveymonkey.com/r/LSLNYN7