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Moderation Resource Albuquerque
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2020 HEDGE STUDY SCREENINGS ANNOUNCED!
Of the 14 subtypes of the group of connective tissue disorders known collectively as the Ehlers-Danlos syndromes (EDS), only the hypermobile type does not yet have identified genetic markers. The HEDGE study began in 2019, dedicated to finding the genetic cause, or causes, of hypermobile EDS (hEDS).
Over 2019 and 2020, the HEDGE study will recruit, screen, and undertake genetic sequencing tests on 1000 individuals who have been diagnosed with hypermobile EDS by the most recent clinical criteria established in 2017. Enrollment is progressing steadily, with an average of 30 or more individuals per month joining the study. To date, 342 participants have been enrolled in the HEDGE study, and the planned target of 1000 participants will be reached in the summer of 2020.
Worldwide Screenings
To take part in the HEDGE study, apply now for one of the upcoming 2020 screenings:
London (UK)/ February 22-23, 2020
Ghent (Belgium) / February 29, 2020
Paris (France) / March 22, 2020
Israel / April 20, 2020
Houston (Texas) / May 23–24, 2020
Frankfurt (Germany) / June 5, 2020
Toronto (Canada) / June 27, 2020
Phoenix AZ (USA) / July 9–11, 2020
Participants will be invited to the screening events based on their information in the Global Registry. If you do not have hypermobile EDS (hEDS), but would like to take part in research, please help by joining the Global Registry for the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and related conditions. To take part in the HEDGE study, apply now for one of the upcoming 2020 screenings:
London (UK)/ February 22-23, 2020
Ghent (Belgium) / February 29, 2020
Paris (France) / March 22, 2020
Israel / April 20, 2020
Houston (Texas) / May 23–24, 2020
Frankfurt (Germany) / June 5, 2020
Toronto (Canada) / June 27, 2020
Phoenix AZ (USA) / July 9–11, 2020
The Ehlers-Danlos Society
1732 1st Ave. #20373
New York, NY 10128
USA
