HEDGE (Hypermobile Ehlers-Danlos Genetic Evaluation) Study

HEDGE Study, the search for the genetic cause of hEDS

Recruitment is 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.


London (UK)/ February 22-23, 2020
Jurys Inn Hotel, 31-35 Clarendon Road Watford, Hertfordshire, WD171JA  (Google Map)

Ghent (Belgium) / February 29, 2020 / Location TBD

Paris (France) / March 21-22, 2020 / Location TBD

Israel / April 20, 2020 / Location TBD

Houston (Texas) / May 23–24, 2020 / Location TBD

Frankfurt (Germany) / June 5, 2020 / Location TBD

Toronto (Canada) / June 27, 2020 / Location TBD

Phoenix AZ (USA) / July 9–11, 2020 / Location TBD

Have a question?


Steps to take part in HEDGE

  1. Sign up for Global Registry here and complete all questionnaires
    1. You must meet the 2017 criteria for hypermobile EDS upon interview and examination by one of our participating physicians.
    2. You may allow a family member to complete the registry on your behalf.
    3. You must be at least 16 years old.
  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.