Published: 07/10/2019 Tags: Medical & Scientific News

The HEDGE study hosts its seventh screening

The Ehlers-Danlos Society is delighted to have held its seventh screening this weekend, for the groundbreaking HEDGE (Hypermobile Ehlers-Danlos Genetic Evaluation) study, devoted to finding the underlying genetic markers for hypermobile EDS (hEDS). Of the subtypes of Ehlers-Danlos syndromes (EDS), only the hypermobile type does not yet have an identified genetic marker. It is also the most common form of EDS.

Since April 6, 2019, The Ehlers-Danlos Society has been recruiting and screening individuals who have been diagnosed with hypermobile EDS, according to the most recent clinical criteria established in 2017. From 323 participants screened across the seven HEDGE events, 267 have now been enrolled into the study. 1000 will be enrolled overall for the study, and their DNA will be genetically sequenced. 

HEDGE screenings have now taken place in: Madrid, Baltimore, London, Nashville, Rome, Indianapolis and Chicago. Upcoming screenings are scheduled at the following locations:

Baltimore, MD (USA) / October 21, 2019

Edinburgh (UK) / November 2, 2019

London (UK) / February 22-23, 2020 

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

Paris (France) / March 22, 2020 

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

Interested participants must be diagnosed with hypermobile EDS, complete the Global Registry, the HEDGE study participant application, and agree to provide a blood sample during the recruitment event. Strong preference will be given to applicants who upload a letter from their physician confirming their hEDS diagnosis according to the 2017 criteria and/or the hEDS diagnostic checklist completed by their doctor. 

We will be recruiting for further participants over the next year for the HEDGE study; please make sure you are on the Global Registry, so you can be invited if you meet the research criteria. A special thank you to everyone who has applied or taken part so far. 

“For me it was an honor to donate my DNA and contribute to this research in my own small way.” Vanessa ~ Rome, Italy.

“I’m beyond excited to be a part of this study! Hopefully this research will help to find the genetic marker for hEDS.” Anon ~ Nashville, Tennessee.

If you took part in the HEDGE study and did not receive a button badge, please contact [email protected].



Virtual Support Groups

Let’s Chat

Would you like to speak to others living with EDS and HSD but can’t get to any support group meetings, events, or conferences?

Our weekly, monthly, and quarterly virtual support groups for people from all over the world are a chance to come and share your story and chat with others for support.

Related Posts

View all Posts

Sign up to The Ehlers-Danlos Society bi-weekly newsletter