Next round of recruitment events announced for the HEDGE research study

Posted April 25, 2019

The Ehlers-Danlos Society is excited to announce our next two participant recruitment events for the landmark Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) research study; June 1st-2nd in London, and June 15th-16th in Baltimore.

This will be the second round of recruitment for the HEDGE study after a successful kickoff at The Ehlers-Danlos Society Global Learning Conference in Madrid, where the first of 1000 patient blood samples were collected for whole-genome sequencing in an effort to find the elusive genetic cause for hypermobile Ehlers-Danlos syndrome (hEDS). A third round has been planned to coincide with our Global Learning Conference in Nashville, Tennessee, July 30th – August 2nd.

“Our first screening was amazing, we are very happy with the outcome,” stated Angela Ballard, Research and Registry Coordinator for The Ehlers-Danlos Society. “We want to understand the genetic markers behind hypermobile EDS, to allow the development of treatment and management for the condition. It has been very exciting, we have had patients from all over Europe coming to be screened, and it’s going to lead to a lot of answers for our community”

“Understanding the genetic causes of hypermobile EDS is absolutely crucial to the EDS community,” said Clair Francomano, MD, chair of The Ehlers-Danlos Society’s Medical and Scientific Board, Director of The Ehlers-Danlos Society Center for Clinical Care and Research at the Harvey Institute of Human Genetics in Baltimore, MD, and a member of the Hypermobile Genetic Research Network. “It will allow us to make unequivocal diagnoses, for one thing. Further, understanding the genetic pathways leading to hypermobile EDS will inform the search for rational therapies for this disorder, and hopefully, eventually, a cure.”

Interested participants must be diagnosed with hypermobile EDS, complete the Ehlers-Danlos and Related Disorders 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.

Applicants accepted by the HEDGE research team will be contacted to schedule an appointment for the study. Participants are responsible for their own travel arrangements and expenses to and from the study.

“We couldn’t be more pleased by the overwhelming response we have received since we announced the HEDGE study,” stated Lara Bloom, International Executive Director for The Ehlers-Danlos Society. “I’ve never seen so many people this excited to provide a blood sample. This is a true testament to how much this research is desperately needed, but also the generosity and kindness of our community. We are so thankful for each and every participant in the HEDGE study. We literally could not do it without you!”

 

Location information:

Baltimore
The Radisson Cross Keys Hotel
5100 Falls Road
Baltimore, MD 21210

London
Wingate Institute of Neurogastroenterology
26 Ashfield Street
Whitechapel, London, E1 2AJ, UK

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