HEDGE (Hypermobile Ehlers-Danlos Genetic Evaluation) Study

HEDGE Study, the search for the genetic cause of hEDS

Recruitment has started for the genetic study of 1000 individuals with hEDS.

NEW RECRUITMENT EVENTS London (UK) on 1 & 2 June / Baltimore (MD USA) on June 15 & 16.
Global Learning Conference in Nashville (TN USA) on July 30–August 1, 2019.

To find preventions and treatments for hEDS, we have to understand the cause. Genetic studies like this one provide a path towards that goal. — Joel Hirschhorn, MD, PhD

REGISTRATION THROUGH THE EDS GLOBAL REGISTRY

  • To be part of this study each candidate must first complete the EDS Global Registry.
  • They must meet the 2017 criteria for hypermobile EDS upon interview and examination by one of our participating physicians.
  • Individuals may allow a family member to complete the registry on their behalf.
If we are successful in identifying the underlying genes for hypermobile EDS, the opportunities for earlier diagnosis and more comprehensive treatment and care are virtually limitless. We are incredibly grateful to the generous donors who have made this possible. — Lara Bloom

Have a question?

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WORLDWIDE SCREENING EVENTS

  • Participants will be invited to the screening events based on their information in the EDS Global Registry.
  • After providing informed consent, accepted participants will have their blood drawn for whole genome sequencing. Family members will not be automatically included in the study, so each family member must individually go through the recruitment process.
  • Recruitment will continue through 2019. Additional screenings may be scheduled at various clinics worldwide with carefully selected clinicians.

SCHEDULED RECRUITMENT EVENTS

London, UK / 1–2 June 2019
Wingate Institute of Neurogastroenterology
26 Ashfield Street, Whitechapel, London, E1 2AJ, UK
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Baltimore, MD USA / June 15–16, 2019
The Radisson Cross Keys Hotel
5100 Falls Road, Baltimore, MD 21210, USA
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EDS Global Learning Conference
Nashville, TN USA / July 30–August 1, 2019
Sheraton Music City Hotel
777 McGavock Pike, Nashville, TN 37214, USA
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Understanding the genetic causes of hypermobile EDS is absolutely crucial to the EDS community. It will allow us to make unequivocal diagnoses. Understanding of the genetic pathways leading to hypermobile EDS will inform the search for rational therapies for this disorder, and hopefully, eventually, a cure. — Clair Francomano, MD

To take part in this study, you first need to be included in the EDS Global Registry. Please click here to do this now.

Priority will be given to conference attendees. On your confirmation email there will be a long booking reference for you to enter. If you need help retrieving it, please contact Stacey Simmonds.

HEDGE Study—Application for Screening

  • You must create an account in the EDS Global Registry and complete the personal history survey to be considered for this study, and have a confirmed diagnosis of hypermobile EDS. Before completing this form, please visit ehlers-danlos.com/eds-global-registry.
  • Are you willing to come to one or more of these events? Please choose as many as you wish, bearing in mind that The Ehlers-Danlos Society cannot cover travel costs. On mobile devices, tap on the field to show the list, then tap on each event to select or deselect your choices. On desktop, use control-click (command-click on Mac) to select or deselect your choices.
  • Please confirm your acceptance by checking the box.
  • You should be notified at the email you entered in this form that your application has been received. When you have been accepted for in-person screening, we will contact you to confirm your time and date. Thank you.
  • Please enter your registration number if yes.
  • Please note The Ehlers-Danlos Society cannot cover travel costs.
  • Please note The Ehlers-Danlos Society cannot cover travel costs.