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.
Twelve in-person screening events have taken place around the world to date, and enrolled 413 individuals with hEDS into the study [July 2020]: 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.
Please note: HEDGE is currently open only to patients of participating physicians and people who have already been contacted. If your physician is a HEDGE participating physician, they will know how to contact the HEDGE team to refer you for consideration. If your physician refers you, the HEDGE team will then ask you to complete the personal history survey.
Steps to take part in HEDGE:
- Complete the EDS and HSD Personal History Survey
You will receive a link from the HEDGE team to complete the personal history survey. This will take approximately 15 minutes to complete and will ask questions regarding your diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS), your symptoms, and family history.
- Upload medical records for review
You will be given the option to upload medical records or documentation 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 hEDS 2017 diagnostic checklist completed by your healthcare provider.
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.
- If your survey results and/or medical records meet the criteria, we will invite you to enroll
HEDGE staff are currently reviewing the survey results and medical record uploads to identify individuals who are interested in participating in the study that meet the enrolment criteria. If you choose to participate in HEDGE, we will provide instructions to watch an explanatory video and obtain your signed consent. We will then arrange for your blood to be drawn at your home or nearby location.