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.
Not medical advice. The index describes research. It does not diagnose or recommend a course of care.
Why this exists
People with EDS compare symptoms and care experiences in forums and patient groups. Some of those reports become research questions. 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 local anesthetic record links those studies and their results.
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.
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.