ArticleBMJ open2019
Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case-control comparison.
Article in BMJ open, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT07688096 (Regenerative Medicine for Joint Hypermobility and Instability), which is not on this map. Cited by 134 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Regenerative Medicine for Joint Hypermobility and Instability: A Prospective, Open-Label, Single-Arm, Step-Care Clinical Study
Who cites it
134 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Meta-Analysis: Chronic Gastrointestinal Symptoms and Comorbidities in Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders.Alimentary pharmacology & therapeutics · 2026Pooled it
- What is the utility of hip arthroscopy in patients with joint laxity? A contemporary systematic review of patient-reported and surgical outcomes.Archives of orthopaedic and trauma surgery · 2023Pooled it
- Association Between Changes in Shoulder Strength and Self-Reported Shoulder Symptoms in Patients With Hypermobility Following 16-Weeks of High-Load or Low-Load Exercise: A Secondary Analysis of an RCT.Physiotherapy research international : the journal for researchers and clinicians in physical therapy · 2026Trial
- HOPE for Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD)-A Pilot Randomised Controlled Trial of Feasibility, Acceptability and Appropriateness.European journal of pain (London, England) · 2025Trial
- The hidden burden: connective tissue, mast cell, and autoimmune comorbidities cluster in POTS with endometriosis.Clinical autonomic research : official journal of the Clinical Autonomic Research Society · 2026Article
- Gastrointestinal Manifestations of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders: A Mentored Review.Digestive diseases and sciences · 2026Review
- The WNT/β-catenin Pathway and Matrix Metalloproteinase-9 in hypermobile Ehlers-Danlos Syndrome and Autism Spectrum Disorder: A Possible Connection.Journal of musculoskeletal & neuronal interactions · 2026Review
- Computable Phenotype for Identifying Undiagnosed Hypermobile Ehlers-Danlos Syndrome: Protocol for a Development and Validation Study.JMIR research protocols · 2026Article
- Characterizing sexual dysfunction in females with hypermobile Ehlers Danlos syndrome or hypermobility spectrum disorder and genito-pelvic pain through cross-sectional analysis.Rheumatology international · 2026Article
- Total Joint Arthroplasty in Ehlers-Danlos Syndrome Is Associated with Increased Instability and Revision: A Systematic Review and Meta-analysis.Indian journal of orthopaedics · 2026Review
- Sexual Dimorphism in Allergic and Mast Cell-Associated Diseases.Clinical reviews in allergy & immunology · 2026Review
- Characterizing Initial Cervical Spine and Neurovascular Findings in 84 Consecutive Patients with Hypermobile Ehlers-Danlos Syndrome: A Retrospective Study.Journal of clinical medicine · 2026Article
- Proximity extension assay-based serum proteomic profiling identifies shared protein signatures in hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders.Clinical proteomics · 2026Article
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- Safety and Impacts of Physical Activity for Individuals Living With Hypermobility Spectrum Disorders and Hypermobile Ehlers-Danlos Syndrome: Protocol for a Scoping Review.JMIR research protocols · 2026Article
- Prevalence and management of mental health comorbidities in a German cohort of patients with Ehlers-Danlos syndromes and a generalized hypermobility spectrum disorder.Orphanet journal of rare diseases · 2026Article
- A Roadmap for Advancing Women's Health in Disorders of the Gut-Brain Interaction.United European gastroenterology journal · 2026Review
- Sex differences in self-reported symptoms and comorbidities associated with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders: A retrospective study.Research square · 2026Article
- Females with hypermobile Ehlers-Danlos syndrome self-report more sexual problems than chronic pain controls without hypermobility, males, or patients with hypermobile spectrum disorders.Frontiers in reproductive health · 2026Article
74 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
Abstract
objectivesTo describe the epidemiology of diagnosed hypermobility spectrum disorder (HSD) and Ehlers-Danlos syndromes (EDS) using linked electronic medical records. To examine whether these conditions remain rare and primarily affect the musculoskeletal system.
designNationwide linked electronic cohort and nested case-control study.
settingRoutinely collected data from primary care and hospital admissions in Wales, UK.
participantsPeople within the primary care or hospital data systems with a coded diagnosis of EDS or joint hypermobility syndrome (JHS) between 1 July 1990 and 30 June 2017.
main outcome measuresCombined prevalence of JHS and EDS in Wales. Additional diagnosis and prescription data in those diagnosed with EDS or JHS compared with matched controls.
resultsWe found 6021 individuals (men: 30%, women: 70%) with a diagnostic code of either EDS or JHS. This gives a diagnosed point prevalence of 194.2 per 100 000 in 2016/2017 or roughly 10 cases in a practice of 5000 patients. There was a pronounced gender difference of 8.5 years (95% CI: 7.70 to 9.22) in the mean age at diagnosis. EDS or JHS was not only associated with high odds for other musculoskeletal diagnoses and drug prescriptions but also with significantly higher odds of a diagnosis in other disease categories (eg, mental health, nervous and digestive systems) and higher odds of a prescription in most disease categories (eg, gastrointestinal and cardiovascular drugs) within the 12 months before and after the first recorded diagnosis.
conclusionsEDS and JHS (since March 2017 classified as EDS or HSD) have historically been considered rare diseases only affecting the musculoskeletal system and soft tissues. These data demonstrate that both these assertions should be reconsidered.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.