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
Rome (Italy) / September 7, 2019
Isola Sacra Rome Airport Hotel
Via della Scafa 416, 00054 – Fiumicino
Indianapolis, IN (USA) / October 5, 2019 / Location TBD
Chicago, IL (USA) / October 6, 2019 / Location TBD
Baltimore, MD (USA) / October 21, 2019
24 West Franklin Street, Baltimore, MD, 21201, US
Edinburgh (UK) / November 2, 2019
The Royal College of Physicians of Edinburgh
9 Queen Street, EH2 1JQ Edinburgh, United Kingdom
London (UK) / February 22-23, 2020 / Location TBD
Ghent (Belgium) / February 29–March 1, 2020 / Location TBD
Paris (France) / March 22, 2020 / Location TBD
Phoenix AZ (USA) / July 9-12, 2020 / Location TBD