The Ehlers-Danlos Society is delighted to announce that 1000 individuals have been invited for enrollment for the Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) study! We continue to recruit for the study to ensure 1000 viable samples are obtained and are excited at the progress the study has made despite the challenges of the pandemic.
HEDGE is an ongoing study that will obtain whole-genome sequences for 1000 people with hypermobile Ehlers-Danlos syndrome (hEDS) under the 2017 criteria, and seek to establish the genetic cause(s) for hEDS.
Of the fourteen types of Ehlers-Danlos syndromes, hEDS remains the only type 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 HEDGE study is a truly global collaborative effort, individuals from 86 countries are enrolled in this study so far. We are so thankful to members of the community who have taken part from all around the world including in:
- Albania
- Antigua and Barbuda
- Argentina
- Australia
- Austria
- Bangladesh
- Belgium
- Belize
- Brazil
- Bulgaria
- Canada
- Chile
- Colombia
- Costa Rica
- Croatia
- Cyprus
- Czechia
- Denmark
- Dominican Republic
- Ecuador
- Egypt
- El Salvador
- Estonia
- Finland
- Falkland Islands
- France
- Georgia
- Germany
- Great Britain
- Guam
- Guatemala
- Hong Kong
- Hungary
- Iceland
- India
- Indonesia
- Ireland
- Isle of Man
- Israel
- Italy
- Jersey
- Jordan
- Japan
- Kuwait
- Latvia
- Lebanon
- Lesotho
- Lithuania
- Luxembourg
- Malaysia
- Malta
- Martinique
- Mexico
- Monaco
- Montenegro
- Morocco
- Netherlands
- New Zealand
- Norway
- Pakistan
- Panama
- Peru
- Philippines
- Poland
- Portugal
- Puerto Rico
- Réunion
- Russia
- Saudi Arabia
- Saint Lucia
- Singapore
- Slovakia
- Slovenia
- Spain
- South Africa
- South Korea
- Sweden
- Switzerland
- Trinidad and Tobago
- Turkey
- Ukraine
- United Arab Emirates
- United States
- Uruguay
Whole-Genome Sequencing
Sequencing of the DNA samples is scheduled to begin at the world-renowned Broad Institute of MIT and Harvard.
The analysis will begin once all the samples have been sequenced. The agreement with the teams involved in the analysis is for up to two years, but we will be getting regular updates and look forward to sharing those with the community.
To take part in the HEDGE study please visit: www.ehlers-danlos.com/hedge-recruitment
