Source catalog
39 sources in five categories. Each has a permanent ID built from its URL and publication date. Every source a record cites appears here, with the same evidence level the record gives it.
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