HEDGE (Hypermobile Ehlers-Danlos Genetic Evaluation) Study

HEDGE Study, the search for the genetic cause of hEDS

Recruitment has underway for the genetic study of 1000 individuals with hEDS.



  • Participants will be invited to the screening events based on their information in the EDS Global Registry.
  • After providing informed consent, accepted participants will have their blood drawn for whole genome sequencing. Family members will not be automatically included in the study, so each family member must individually go through the recruitment process.
  • Recruitment will continue through 2020. Additional screenings may be scheduled at various clinics worldwide with carefully selected clinicians.


Baltimore, MD (USA) / October 21, 2019
Indigo Hotel
24 West Franklin Street, Baltimore, MD, 21201, US
Google Maps

Edinburgh (UK) / November 2, 2019
The Royal College of Physicians of Edinburgh
9 Queen Street, EH2 1JQ Edinburgh, United Kingdom
Google Maps

London (UK) / February 22-23, 2020 / Location TBD

Ghent (Belgium) / February 29–March 1, 2020 / Location TBD

Paris (France) / March 22, 2020 / Location TBD

Phoenix AZ (USA) / July 9-12, 2020 / Location TBD

Have a question?


Steps to take part in HEDGE

  1. Sign up for Global Registry here and complete all questionnaires
    1. They must meet the 2017 criteria for hypermobile EDS upon interview and examination by one of our participating physicians.
    2. Individuals may allow a family member to complete the registry on their behalf.
    3. You have to be aged over 16 years.
  2. Sign up for upcoming HEDGE event and indicate which event you would like to attend, please see list above
  3. If you have any additional questions please see our FAQs here
  4. Please do not attend any event unless you have been sent a confirmed appointment slot. 

HEDGE Study—Application for Screening

  • You must create an account in the EDS Global Registry and complete the personal history survey to be considered for this study. Before completing this form, please visit ehlers-danlos.com/eds-global-registry.
  • Are you willing to come to one or more of these events? Please choose as many as you wish, bearing in mind that The Ehlers-Danlos Society cannot cover travel costs. On mobile devices, tap on the field to show the list, then tap on each event to select or deselect your choices. On desktop, use control-click (command-click on Mac) to select or deselect your choices.
  • Please confirm your acceptance by checking the box.
  • You should be notified at the email you entered in this form that your application has been received. When you have been accepted for in-person screening, we will contact you to confirm your time and date. Thank you.
  • Please enter your registration number if yes.
  • Please note The Ehlers-Danlos Society cannot cover travel costs.
  • Please note The Ehlers-Danlos Society cannot cover travel costs.