Out of the 14 identified subtypes of the Ehlers-Danlos syndromes, hypermobile EDS (hEDS) is the most prevalent type and is the only one for which we currently do not have a genetic marker. Our moonshot is a clinical research study with the goal of finding the underlying genetics and gene expression/s of hEDS. The research will start by enrolling 1000 study participants with a confirmed diagnosis of hEDS based on the 2017 criteria.
This study has Institutional Review Board oversight and approval by the Genetic Alliance (IORG0003358) IRB (IRB00003999). Genetic Alliance Federal Wide Assurance number is: FWA00017292. More information can be found on this IRB by putting Genetic Alliance in the NAME search field on the Office of Human Research Protections website.