Published: 10/11/2025 Tags: The Ehlers-Danlos Society News

hEDS/HSD Criteria Review Study Update

The hEDS/HSD Criteria Review Study is an international collaboration to improve how hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD) are diagnosed.

Led by the hEDS/HSD Working Group of the International Consortium on EDS & HSD, this research is reviewing and refining the 2017 diagnostic criteria to make them more accurate, inclusive, and practical for clinical use worldwide.

The Ehlers-Danlos Society has acted as Sponsor to the study, providing the administration and governance support needed to run it since its launch in 2022.

The study includes 326 participants across eight international sites in six countries, combining clinical data, joint hypermobility measures, and advanced statistical modeling to identify the features that best distinguish hEDS and HSD from non-hypermobile chronic pain conditions.

Early findings show that hEDS and HSD exist on a shared biological spectrum with overlapping features. These results will inform the development of a revised diagnostic model, which will tested in clinical practice starting in late 2025.

Results and recommendations are expected to be published in December 2026.

Scroll below for the latest update from the study and key findings.

Slide titled ‘hEDS/HSD Criteria Review Study’. Text reads: ‘Reviewing and refining the 2017 diagnostic criteria for hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD).’ On the right side, there is a blue illustration of a magnifying glass examining a webpage or document. The background includes white and blue curved design elements.
Slide titled ‘Why This Study Matters’. Text reads: ‘The 2017 diagnostic criteria were an important step forward for the diagnosis of hEDS and HSD. However, questions remain about how well they capture the most appropriate range of signs, symptoms, and associated conditions.’ On the right side, there is a blue circular icon containing a white question mark. The background has blue and white curved design elements.
Slide titled ‘Why This Study Matters’. Text reads: ‘This study aims to make diagnosis more accurate, inclusive, and clinically useful.’ On the right side are two blue icons: one showing a magnifying glass over connected nodes, and the other showing a person symbol within a circular target. The background features white and blue curved design elements.
Slide titled ‘Study Aims’. Text lists four bullet points, each marked with a blue check mark icon: Identify features that distinguish hEDS and HSD from other chronic pain conditions. Evaluate different ways of measuring joint hypermobility. Develop and test revised diagnostic models to improve accuracy and reduce misdiagnosis. Assess how well these models work compared to the 2017 criteria for hEDS and HSD in practice. The background includes blue and white curved design elements.
Slide titled ‘How It’s Being Done’. Text reads: ‘Researchers collected data from 326 adults across six countries, including participants with: hEDS, HSD, and other chronic pain conditions. They are using this data to compare these groups and evaluate new diagnostic approaches.’ On the right side, there is a blue magnifying glass icon with the number 326 inside, and below it, an icon of a webpage with a globe and the number 6. The background has white and blue curved design elements.
Slide titled ‘Key Findings’. Text reads: ‘The hEDS/HSD Criteria Review study is ongoing. So far, results show that certain combinations of features are more common in hEDS and HSD than in other chronic pain conditions.’ On the right side, there is a blue icon of a document with a magnifying glass showing a line and bar graph. The background has white and blue curved design elements.
Slide titled ‘Key Findings’. Text reads: ‘At this time, no single feature clearly separates hEDS from HSD. This supports the idea that hEDS and HSD exist on a shared spectrum with overlapping features.’ On the right side, there is a blue icon resembling a webpage or data dashboard. The background features white and blue curved design elements.
Slide titled ‘What’s Next?’. Text reads: ‘A new diagnostic model for hEDS and HSD will be tested in real-world clinics starting in late 2025. This next phase will explore whether revised criteria improve diagnostic accuracy and ease of use. Results and recommendations for updated criteria and naming are expected in December 2026.’ The background includes white and blue curved design elements.

Join The Ehlers-Danlos Society’s message board

Inspire

The Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders Support Community connects patients, families, friends and caregivers for knowledge, support and inspiration.

This community is sponsored by the Ehlers-Danlos Society, an Inspire trusted partner.

Related Posts

View all Posts

Sign up to The Ehlers-Danlos Society mailing list

Click here to sign up