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.


Impact of Hypermobility Questionnaire for Adolescents.

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, or Hypermobility Spectrum Disorder? 

If so, we need you and 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 – Hypermobility Impact of Hypermobility Scale. It is called ‘The Spider” because there are eight different symptom domains. We are currently validating the pain and fatigue domains. 

Below is the link to the questionnaire for children to complete.  Those who are 18 can consent for themselves. Parents of children aged 13-17 need to click on the link and give consent. Then children can consent and fill in the questionnaire. It will take less than 10 minutes.

Hypermobility Fatigue and Pain Questionnaire


RECRUITING: Are you an EDS or HSD UK resident and have been treated outside the UK for Cranial/Spinal Surgery?

Please help. We would be grateful if you would consider filling in the questionnaire found by clicking or copy and pasting the link below. It is for people who live in the UK, have Ehlers Danlos (EDS) or Hypermobility Spectrum Disorder (HSD), and have had cranial and / or spinal surgery outside the UK for their EDS/HSD. There is a lot of debate in the medical profession regarding the use of some of these operations, and anecdotal reports of people who have been helped by surgery, but also of others who have had significant complications or required multiple operations with little benefit. There is very little data published to support either that these should or should not be done.

This short questionnaire will only take a few minutes of your time but long term could benefit people from the UK who have spinal or cranial conditions related to EDS or HSD. The questionnaire aims to try to obtain data on the extent of the problem to see if you have been helped with your condition. Your data will be fully anonymized. By completing the questionnaire, you agree to the data submitted being used for future publications and presentations.

Complete the Survey Here

Thank you for your time and help,

Andrew Brodbelt, Consultant Neurosurgeon, The Walton Centre NHS Foundation Trust

Mark Radon, Consultant Neuroradiologist, The Walton Centre NHS Foundation Trust

Harry Sharples, Medical student, Liverpool University.

Contact for questions. abrodbelt@doctors.org.uk


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)


A PCORI Eugene Washington Engagement Award, the Type B Aortic Dissection Collaborative, is looking for patients with Type B Aortic Dissection to take a survey on research, healthcare, and to share their experiences.

This confidential survey is meant for patients with a diagnosis of Type B Aortic Dissection (TBAD). The goal of the survey is to get a better understanding of the TBAD community and what our needs are. This survey was developed by the TBAD Collaborative, which is a project bringing together patients, researchers, doctors, and other members of the TBAD community as partners in patient-centered outcomes research.
 
The Collaborative is building research infrastructure to facilitate patient-centered outcomes research training, support, and networking among patients with TBAD, vascular surgeons, cardiac surgeons, cardiologists, research consortia dedicated to aortic dissection, industry stakeholders, and patient advocacy groups. The project is led by Dr. Sherene Shalhub and Dr. Peter Byers from the University of Washington, and an Advisory Group of patients and family members of those affected by aortic dissection.

 

Complete the survey here. 

 

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