Source catalog
39 sources, grouped by kind of evidence. Each entry links to the original and names its publisher and study design or source type.
How to read an entry
| Kind of evidence | The label in each group heading: clinical, community, historical, registry, or gray literature. The methodology describes each kind. |
|---|---|
| Evidence level | The study design or source type after the publisher, such as cross-sectional study or cross-venue pattern. Each kind of evidence has its own scale, so compare levels only within one kind. A source has the same level in every record that cites it. |
| Date and access | The publication date when the catalog records one, and an access label such as paywalled or registration when the original is not openly available. |
| Source ID | The permanent ID under each entry, built from the source's URL and publication date. Records in the data files cite sources by this ID. |
| Last checked | A date on each record page, taken from the record's reviewed_at field. It is not a clinical review. Every correction, including one made after that date, is listed in the change log on the research page. |
A record page lists its sources under Evidence, with the same kind and level labels. For example, the record hEDS diagnosis remains clinical despite the KLK15 finding cites clinical, community, and registry sources.
clinical 18 sources
- Articular mobility in an African populationBeighton, Solomon, and Soskolne; the origin of the nine-point Beighton score.source-0bcf3a495f5d5a3f3899
- Hypermobile Ehlers-Danlos syndrome (a.k.a. Ehlers-Danlos syndrome type III and Ehlers-Danlos syndrome hypermobility type): Clinical description and natural historysource-1ad3f0edd57e0fab1524
- Surviving their stripes: the diagnostic odyssey and impact of life with hypermobile Ehlers-Danlos syndromeHill et al.; qualitative study using a descriptive phenomenological approach. Describes dismissal, medical gaslighting, and the validation a diagnosis brought.source-21337422dde3976b584c
- Resistance to local anesthesia in people with the Ehlers-Danlos syndromes presenting for dental surgerySchubart et al.; online survey of 988 people with EDS and 255 without. Of those who had a dental local anesthetic, 88% of 980 with EDS and 33% of 249 without recalled inadequate pain prevention.source-27684d4afee8b83b9d25
- The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndromeEngelbert et al.; describes itself as a guideline for physical therapists and says the research on managing JHS/hEDS is limited in size and quality.source-328501b217c2b3d0d2d2
- The 2017 international classification of the Ehlers-Danlos syndromesMalfait et al.; the current nosology defining 13 subtypes.source-36ad1cab53c4cea4f4b4
- PubMed Ehlers-Danlos query, most recentSearch page used by the literature monitor; not cited as record evidence.source-80a5042e5779fea862b6
- An exploration of the journey to diagnosis of Ehlers-Danlos Syndrome (EDS) for women living in AustraliaTrudgian and Flood; 2023 survey of 152 women with EDS in Australia, recruited on social media. More than half first noticed symptoms over 15 years before diagnosis.source-8d222b21a7423563aba4
- Local anaesthetic failure in joint hypermobility syndromeHakim, Grahame, Norris, Hopper; letter reporting a questionnaire from a 2003 study. 58% of 172 women with joint hypermobility syndrome and 21% of 53 age-matched controls without hypermobility said a local anesthetic had not been as effective as it should have been.source-99c47d7654307a3505da
- Ehlers-Danlos syndromes: revised nosology, Villefranche, 1997Beighton et al.; the six-type Villefranche nosology that governed diagnosis from 1998 to 2017.source-a0e3bc5bd3a0b3545cf8
- Ehlers-Danlos Syndromes and Hypermobility Spectrum DisordersChapter 4 of the National Academies' 2022 report Selected Heritable Disorders of Connective Tissue and Disability, hosted on NCBI Bookshelf.source-be972ed50decef4cbf0b
- Pain management in the Ehlers-Danlos syndromesChopra et al.; reviews the causes of chronic pain in EDS and the options for managing it, and says treatment studies are few and insufficient to guide management.source-d7ba05272083315d9e1f
- A framework for the classification of joint hypermobility and related conditionsCastori et al.; defines HSD relative to hEDS.source-d7dec285eaee780f18a3
- Health care supply in patients with Ehlers-Danlos syndromes and generalized hypermobility spectrum disorder: a German perspectiveRauterberg et al.; survey of 99 adults at the Cologne EDS clinic. Median time to diagnosis 22.0 years overall (mean 22.9), 23.0 for hEDS/HSD and 14.5 for classical and classical-like EDS, per Table 2; the abstract labels the medians as means.source-de164233cddfefc4105a
- Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case-control comparisonDemmler et al.; in 2016/2017 about 1 in 500 people in Wales had a recorded diagnosis of EDS or joint hypermobility syndrome.source-eaeabc3db4dd07d41bc5
- Patients with Ehlers-Danlos syndrome experience reduced effectiveness of lidocaine local anesthetic: a randomized cross-over clinical trial135 participants (91 with EDS, 44 healthy). At 15 and 30 minutes fewer EDS participants had numbness (60% vs 84%, 53% vs 80%), which the authors read as a shorter lidocaine effect.source-ed80c4098795181b156a
- KLK15 alters connective tissues in hypermobile Ehlers-Danlos syndromeGensemer, Norris, and colleagues; identifies KLK15 as a contributor to hEDS, with a knock-in mouse model.source-ee867f99ac8808a4ef80
- The diagnostic journey in adults with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disordersAnderson and Lane; synthesis of 13 qualitative studies of adults with hEDS or HSD. Groups the causes of diagnostic delay into disease, patient, provider, and system factors.source-fa671c0df94cd9c20ecb
community 10 sources
- r/HypermobilitySubreddit for joint hypermobility; overlapping membership with r/ehlersdanlos.source-008a3b01a05582538013
- What is EDS?source-1f24758814c322b4d394
- Ehlers-Danlos Syndrome Patient Support Communitysource-2fd8a13a36c4a8bd2b01
- Patient Network and Supportsource-4a561dc6a492a2155ab1
- EDS and HSD Support CommunityThe Ehlers-Danlos Society's message board on Inspire.source-641ce29242a70e8a5f01
- The Norris Lab hEDS Genetic Study updateThe society's June 2024 summary of the KLK15 study, before its peer-reviewed publication.source-bb268c000069896e8023
- EDS typessource-c55aca51ea775bf6d160
- The Ehlers-Danlos SocietyInternational patient organization for EDS and HSD; runs the DICE registry, EDS ECHO, and research funding.source-d4079481e0bd2ac8d5f3
- r/ehlersdanlosPublic subreddit for discussion of EDS.source-ec36295ad04f34148c63
- EDS and HSD communitysource-fcaca0c559f4881b8f2f
historical 2 sources
- Ehlers-Danlos syndrome: a historical reviewParapia and Jackson; the standard historiography from Hippocratic descriptions through the Villefranche era.source-5c33d96b50581fbe82f8
- Chernogubov's syndrome: a translation of the first modern case report of the Ehlers-Danlos syndromeDenko; English translation of the 1892 Chernogubov case reports.source-fd495bad5265f19454c2
registry 8 sources
- DICE EDS and HSD Global RegistryGlobal patient registry feeding survey-based research outputs.source-1dfb4ae3ff5aafdd0577
- EDS ECHO programProject ECHO-based clinician and community education program.source-2542220d7aa64b3f7ca7
- The HEDGE Study: Hypermobile Ehlers-Danlos Genetic Evaluation1,000-participant hEDS/HSD genetics study. In October 2025 the society expected first publications in late 2025 or early 2026.source-3440a2b9d5d99c580d3a
- Local Anesthetic Response in Ehlers-Danlos Syndrome (EDS) and Healthy Volunteerssource-50e9fc30eba2907905ba
- Ehlers-Danlos Syndrome trial searchsource-7caade9be5b82d40a0c7
- Comorbidity, misdiagnoses, and the diagnostic odyssey in patients with hypermobile Ehlers-Danlos syndromeHalverson et al.; Global Registry survey of 505 people with clinically confirmed hEDS. Mean of 10.45 other diagnoses; average time to diagnosis 10.39 years.source-9a67b455782a95159bd9
- Ehlers-Danlos syndromesource-c1d4d83f1e715158725f
- Ehlers-Danlos syndrome, Orphanet disease entrysource-ed3f4f3ef7068a32fe53
gray literature 1 source
- Variants in the Kallikrein Gene Family and Hypermobile Ehlers-Danlos Syndromesource-daaa8e28125b9b3bb775