22/10/2024
Many of us have been waiting for a long time to hear about the results of the HEDGE study. 2025 is not that far away to access the publications! In the meantime...read about how to stay up to date with the genetic study findings.
๐งฌExciting HEDGE Study Update!
Hypermobile Ehlers-Danlos syndrome (hEDS) remains the only type of Ehlers-Danlos syndrome (EDS) that does not have known genetic markers and diagnosis cannot be confirmed through genetic testing. Many people with hEDS, therefore experience delays in diagnosis, can be misdiagnosed, and can experience delays in accessing suitable treatments.
The Ehlers-Danlos Societyโs HEDGE study is a truly global collaborative effort with participants from 86 countries, analyzing 1021 whole-genome sequences from individuals who have hEDS by the 2017 clinical diagnostic criteria.
The HEDGE analysis team is preparing for the publication of their initial findings from the HEDGE (Hypermobile Ehlers-Danlos Genetic Evaluation) study. The team plans to publish a number of papers, which are expected to be released in 2025.
Ahead of this, the team submitted abstracts describing preliminary work on the HEDGE study to the American Society for Human Genetics (ASHG) conference. The ASHG - American Society of Human Genetics is the world's largest professional community driving the field of human genetics and genomics research and translation, so this is incredible news. The conference committee accepted three abstracts.
Details of how to view the abstracts, lay summaries, and FAQs can be found here: https://www.ehlers-danlos.com/ashg-abstracts/
In addition, The Ehlers-Danlos Society is producing a general Q&A webinar update on the HEDGE Study and the publications, which will be available from November 8, 2024, once the ASHG conference presentation has been given and in compliance with their press release requirement.
To stay up to date with the latest HEDGE news please join our newsletter here: https://www.ehlers-danlos.com/newsletter-sign-up/ HEDGE participants have been contacted in advance by our research team.