To break down geographical barriers in research participation and to adapt to limitations on travel, The Ehlers-Danlos Society is delighted to announce a new screening and enrollment process for the Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE).
The exciting newly-established process will make it possible for individuals with hypermobile Ehlers-Danlos syndrome (hEDS) to enroll in the groundbreaking study, without traveling to an in-person event. The Ehlers-Danlos Society will now work from medical records uploaded to its EDS and HSD Global Registry, to enable more members of the hEDS community to take part than ever before.
About HEDGE. The Hypermobile Ehlers-Danlos Genetic Evaluation is an ongoing study that will obtain whole-genome sequences for 1000 people with hEDS under the 2017 criteria, and seek to establish underlying genetic causation. 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. If we are successful in identifying the underlying genes for hEDS, we can create vital opportunities for earlier diagnosis, and more comprehensive treatment and care.
Twelve in-person screening events have taken place around the world to date, and enrolled 413 individuals with hEDS into the study: each participant has given a blood sample towards the 1000-participant goal. Under the new enrolment system, invitees can now have blood drawn at home or at other locations.
Take part in HEDGE. To be considered for enrollment in HEDGE, you must first create an account in the EDS and HSD Global Registry. You must then complete the surveys you will find on your registry dashboard. If you are already in the registry please go back and check that you have completed all the surveys and uploaded any relevant documentation needed. You must be at least 16 years old to join the study. A family member can sign up on your behalf.
You must upload a document from your healthcare provider that establishes you meet the criteria for hypermobile Ehlers-Danlos syndrome under the 2017 guidelines and itemizes those clinical findings.
Typically, this will be the record from the initial visit where your provider made the diagnosis.​ A document or record simply stating you meet the requirements will not be sufficient; the specific elements required by the 2017 guidelines must be included. Some examples of documents would be; a letter confirming the diagnosis, or a completed hEDS 2017 diagnostic checklist.
If you do not have the full record from the visit when your doctor first established the diagnosis, you should request it from your doctor. However, if that visit was before 2017, it is unlikely the record will contain the required itemized information. After you obtain the record establishing your diagnosis under the 2017 criteria, you should upload it to the EDS and HSD Global Registry.
HEDGE staff are currently reviewing these uploaded records to identify individuals who are interested in the study and meet the enrollment criteria; we will then invite those individuals to participate. This process will start at the end of the summer and continue through the end of 2020, so please do not worry if you are not contacted for some time.
If you choose to participate in HEDGE, we will arrange for a video or audio conference call to explain the study in detail and obtain your signed consent. We will then arrange for your blood to be drawn at your home or other location. We expect to begin inviting participants under this new program by September 2020.
About HEDGE. The study has been approved by the Genetic Alliance Institutional Review Board. For more information about HEDGE, click here.
About the EDS and HSD Global Registry. The Ehlers-Danlos Syndrome and Hypermobile Spectrum Disorder Global Registry is a repository of information submitted by individuals with EDS or HSD. The registry is sponsored by the Ehlers-Danlos Society and hosted by Genetic Alliance. It has been approved by the Genetic Alliance Institutional Review Board. To reach the EDS and HSD Global Registry, click here.
About the Ehlers-Danlos Society. The Ehlers-Danlos Society is a global organization focused on advocacy, education, and research related to Ehlers-Danlos syndrome and hypermobility spectrum disorder.
