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.
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
Baltimore, MD USA / June 15–16, 2019
The Radisson Cross Keys Hotel
5100 Falls Road, Baltimore, MD 21210, USA
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.