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.


Obstetric and Gynecologic Experience of Women with Ehlers-Danlos Syndrome

 
University of Toronto researchers are conducting a study of individuals assigned female at birth that live with Ehlers Danlos Syndrome (EDS). Their goal is to understand the issues patients with EDS may face when it comes to female reproductive health, including fertility, pregnancy complications, menstrual concerns, sexual health, pelvic floor issues, and pelvic pain. For more info and to complete the one-time 25-40 min survey, visit: tinyurl.com/EDSstudy

Ehlers-Danlos syndromes (EDS) and Hypermobility Spectrum Disorder (HSD) Healthcare Survey/ Encuesta de salud sobre síndromes de Ehlers-Danlos (EDS) y trastorno del espectro de hipermovilidad (HSD) 

*** This study is for individuals living in the United States or Canada.

Helfgott Research Institute and Healthy Living Community are focused on understanding how individuals with Ehlers-Danlos syndromes (EDS) or Hypermobility Spectrum Disorder (HSD) feel about the healthcare that they receive; how it affects them; and what treatments they have used to manage their symptoms. They hope that to learn what therapies, supplements, and dietary and lifestyle changes are working well in the EDS & HSD community, in an effort to educate healthcare professionals to better support rehabilitation.

All participants will remain anonymous. The survey will take around 30 minutes of your time and can be completed from your computer or smartphone here.

Síndromes de Ehlers-Danlos (EDS) y Trastorno del Espectro de Hipermovilidad (HSD) Encuesta de Cuidado de Salud
 
***Este estudio es para individuos quienes viven en los Estados Unidos y Canadá
 
El Instituto de Investigación Helfgott y Healthy Living Community se enfocan en entender cómo se sienten las personas con síndromes de Ehlers-Danlos (EDS) o trastorno del espectro de hipermovilidad (HSD) con la atención médica que reciben; cómo les afecta; y qué tratamientos han utilizado para controlar sus síntomas. Esperan saber qué terapias, suplementos y cambios en la dieta y el estilo de vida están funcionando en la comunidad de EDS y HSD, con el intento de educar a los profesionales de la salud para que apoyen la rehabilitación de mejor manera.
 
Todos los participantes permanecerán anónimos. La encuesta tomará alrededor de 30 minutos de su tiempo y se puede completar desde su computadora o teléfono aquí.

Perspective of Individuals with Hypermobile Ehlers-Danlos Syndrome and Related Conditions on Seeking a Genetic Evaluation. 

The researchers are inviting individuals, at least 18 years old, with joint hypermobility, Hypermobile Spectrum Disorder, or Hypermobile Ehlers Danlos Syndrome to participate in a research study that aims to understand the utility of the genetics evaluation from the perspective of the patient. Specifically, we are hoping to hear from individuals who have been seen in genetics, who are trying to see genetics, and those that chose not to see genetics. The results will help clarify the expectations of individuals with these diagnoses about the role genetics could play in their care and hopefully provide needed insights into alternate ways of addressing the diagnostic and health care management needs of this population. The objective is to help both patients and clinicians streamline the diagnostic journey for individuals who seek a genetics evaluation.

Participation includes completion of an anonymous online survey that should take between 20-30 minutes to complete. Click here to complete the survey.


Quality of Life, Coping, Adaption, and Adjustment for Individuals with Ehlers-Danlos Syndromes (EDS) or Hypermobility Spectrum Disorder (HSD). 

You are invited to participate in a research study being conducted by researchers at Auburn University examining quality of life, coping, adaptation, and adjustment to EDS/HSD. You are eligible to participate if you are at least 18 years old and have been diagnosed with any type of Ehlers Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD). Participation involves the completion of an anonymous online survey, which should take 15-20 minutes to complete.

Click here to complete the survey


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)


EDS Food Access and Dietary Changes Survey, exploring how the Covid-19 pandemic has impacted ability to access food and dietary changes as a result of the pandemic.

You are being invited to volunteer to participate in a research study conducted by researchers at Penn State University College of Medicine. The aim of this study is to gather information from people with Ehlers-Danlos syndromes to understand how the COVID pandemic has impacted their ability to access food and the dietary changes as a result of the pandemic. The study involves completion of an online survey questionnaire about access to food and dietary practices pre-pandemic and currently. The questionnaire takes approximately 20-30 minutes to complete. The Summary Explanation of Research can be found on the survey link below.

Please contact the researcher if you have questions
Jane R. Schubart PhD
Penn State College of Medicine
Hershey, PA (USA)
E-mail: jschubart@pennstatehealth.psu.edu

Complete the survey here

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