About

EDS Research Index is an independent index of Ehlers-Danlos syndromes research for patients and clinicians. Each record links its sources and labels the kind of evidence behind it.

Why this exists

Rare diseases break the usual order of evidence. Evidence-based medicine ranks study designs, from systematic reviews down to case reports, and trials in the Ehlers-Danlos syndromes are few. People with EDS compare notes in forums and patient groups, and what they report can point research somewhere new. Patients reported that local anesthetics often failed them; surveys in 2005 and 2019 measured how often, and a randomized trial published in 2026 found that fewer people with EDS were still numb 15 and 30 minutes after a lidocaine injection.

The index keeps each kind of evidence visible and separate. A forum pattern is labeled as a patient report and graded on its own scale, so it can be taken seriously without being mistaken for a trial result. The diagnostic criteria were rewritten in 1988, 1997, and 2017, and the most common type, hEDS, still has no confirmed gene, so every record also names the types and criteria it applies to.

Editorial position

• Each source is filed as clinical, community, historical, registry, or gray literature, and each kind has its own scale of evidence levels.
• Patient-community material is summarized by venue. No individual is named or quoted, and these records are labeled as patient reports.
• Historical and folk practices are listed because they happened. Listing one says nothing about whether it works.
• When the evidence is unsettled, the record says so: contested records are labeled contested, and emerging ones carry a date for reassessment.
• Every record names its sources, the EDS types it applies to, and the diagnostic criteria in force when its evidence was gathered.

What this is not

This index is not medical advice, does not diagnose, and does not recommend or discourage any course of care. If you believe you may have EDS, the index can show you what is known and where the evidence lives; it cannot tell you what you have or what to do.

Other EDS references

The Ehlers-Danlos Society hosts the 2017 classification and the hEDS diagnostic checklist. GeneReviews has clinician-written chapters on vascular, classical, and hypermobile EDS. Orphanet lists expert centers and prevalence estimates, and GARD and NORD have plain-language overviews. This index is narrower. It lists individual findings, practices, and events, shows the kind of evidence behind each, and keeps patient reports next to clinical studies without ranking them together.

Independence and source code

The index is published by Hraness as an independent editorial project. It is not affiliated with, endorsed by, or funded by The Ehlers-Danlos Society or any medical body. The society appears throughout the index because it runs the DICE Global Registry and EDS ECHO. The data and the code that checks and renders it are public at github.com/hraness/eds-research.

Contact and corrections

Corrections are welcome; see contact. The methodology sets out the rules, and the research program page lists open questions, searches, and the change log.