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.

NEW RECRUITMENT EVENTS

WORLDWIDE SCREENING EVENTS

  • 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.

SCHEDULED RECRUITMENT EVENTS

Paris (France) / November 7-8, 2020
Hotel Mercure Paris Orly Rungis, 20 Avenue Charles Lindbergh, 94656 Rungis Paris France

IMPORTANT ANNOUNCEMENT MARCH 20, 2020

The Ehlers-Danlos Society HEDGE Screenings Canceled

Given the continued concerns with COVID-19, and our concerns over the wellbeing of our community, it is with deep regret that The Ehlers-Danlos Society has had to make the difficult decision to cancel HEDGE screening events at the following locations:

Houston (Texas) / May 23-24, 2020

AC Hotel by Marriott Houston Downtown, 723 Main St, Houston, TX 77002, US

Frankfurt (Germany) / June 5, 2020

Fleming’s Conference Hotel, Elbinger Strasse 1-3, Frankfurt am Main, Germany, 60487

Toronto (Canada) / June 27, 2020

Sheraton Toronto Airport Hotel & Conference Centre, 801 Dixon Road, M9W 1J5, Toronto

Phoenix AZ (USA) / July 9–11, 2020
JW Marriott Scottsdale Camelback Inn Resort & Spa, 5402 E Lincoln Dr, Scottsdale, AZ 85253

 

When will new event dates be announced? 

Currently we cannot provide new dates. As soon as new dates are confirmed we will follow up with participants and post all updates on our HEDGE webpage.We will be announcing new dates and locations for the HEDGE screenings later in the year. The HEDGE team will contact those already signed up to offer a new date and time where possible if screenings are rescheduled in the same or nearby locations.

Will you still do these locations?

We will do all we can to still get to as many locations, but many of these events were connected to other canceled things happening. We will announce as soon as we can where we are able to get to.

Is there another way that I can participate in HEDGE remotely?

No. The only way to participate in HEDGE is by attending a confirmed screening event.

Can my doctor do the screening and blood test and send it to you?

No. The only way to participate in HEDGE is by attending a confirmed screening event.

How do I cancel my travel tickets and hotel? 

Please contact your travel provider and the hotel directly regarding your booking. Please check with your own credit card company and insurance company on their specific cancellation policies, in regards to getting your travel refunded.

How will this impact the HEDGE study?

There is no long term expected impact on the HEDGE study. However, we will likely need to update the timelines for the different stages of the study.

If there are any further concerns or questions about HEDGE screening events please contact registry@ehlers-danlos.com

Have a question?

CLICK HERE FOR FAQ

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.