Ehlers-Danlos Syndrome, Hypermobility, and Vascular Compression

Peer-reviewed research references

Tinkle B, et al. Hypermobile Ehlers-Danlos syndrome and related hypermobility spectrum disorders. Am J Med Genet C. 2017. The 2017 framework remains the current published basis until the 2026 update is released.

Phenotypic Clusters and Multimorbidity in Hypermobile Ehlers-Danlos Syndrome. Mayo Clin Proc Innov Qual Outcomes. 2024. DOI: 10.1016/j.mayocpiqo.2024.04.001

Neurological and spinal manifestations of the Ehlers-Danlos syndromes. Am J Med Genet C Semin Med Genet. 2017. DOI: 10.1002/ajmg.c.31549

Major update ahead: The Road to 2026

The Ehlers-Danlos Society and the International Consortium on EDS and HSD are in the final phase of a major update to the 2017 International Classification. The Society states that updated classification criteria for all Ehlers-Danlos syndromes and hypermobility spectrum disorders are expected to be published in December 2026 in the American Journal of Medical Genetics Part C.

The work is based on international research evidence, systematic literature review, expert consensus, peer review, and lived-experience input. The Society describes this as an active scientific process, so proposed ideas should not be treated as final diagnostic criteria until the peer-reviewed publication is released.

What researchers are examining

The hEDS/HSD Criteria Review Study is evaluating which signs, symptoms, and associated conditions best distinguish hEDS and HSD from other chronic pain conditions; whether joint assessments beyond the Beighton score improve recognition of generalized joint hypermobility; and whether a revised diagnostic model improves accuracy and ease of use in real-world clinical practice.

Early information shared by The Ehlers-Danlos Society says that certain combinations of features appear more common in hEDS/HSD, but no single feature currently separates hEDS from HSD on its own. The research team is also testing an expanded four-joint hypermobility assessment alongside the Beighton score. These are preliminary findings, not final criteria.

What happens after the classification update

The Society's Road to 2026 materials also describe a second phase expected in March 2027, including a clinician diagnostic pathway and best-practice assessment and treatment guidance for hEDS and HSD. VCA will update this education page after the final peer-reviewed publications are available.

Official Road to 2026 sources

The Ehlers-Danlos Society — Road to 2026: https://www.ehlers-danlos.com/road-to-2026/

The Ehlers-Danlos Society — Road to 2026 FAQs: https://www.ehlers-danlos.com/road-to-2026/faqs/

The Ehlers-Danlos Society — hEDS/HSD Criteria Review Study Update: https://www.ehlers-danlos.com/heds-hsd-criteria-review-study-update/