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.


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.


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


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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