Observational studyRheumatology international2021
Are patients with hypermobile Ehlers-Danlos syndrome or hypermobility spectrum disorder so different?
Observational study in Rheumatology international, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 32 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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
32 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Psychological interventions to improve pain, fatigue, anxiety, depression, and quality of life in children and adults with hypermobility spectrum disorders and Ehlers-Danlos syndrome: a systematic review.Rheumatology international · 2024Pooled it
- Hypermobile Ehlers-Danlos syndrome and disorders of the gastrointestinal tract: What the gastroenterologist needs to know.Journal of gastroenterology and hepatology · 2022Pooled it
- 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
- Obstructive sleep apnea and CPAP efficacy in patients with Hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder: a case-control study.Sleep & breathing = Schlaf & Atmung · 2026Article
- Proximity extension assay-based serum proteomic profiling identifies shared protein signatures in hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders.Clinical proteomics · 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
- Sex differences in self-reported symptoms and comorbidities associated with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders: A retrospective study.Research square · 2026Article
- Outcomes and experiences of patients with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders undergoing surgical interventions: a scoping review.Rheumatology international · 2026Article
- Characteristics of Pain in Patients Diagnosed With Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders. An Observational Study.Pain research & management · 2026Observational
- Proteomic discoveries in hypermobile Ehlers-Danlos syndrome reveal insights into disease pathophysiology.ImmunoHorizons · 2025Article
- Health care supply in patients with Ehlers-Danlos syndromes and generalized hypermobility spectrum disorder: a German perspective.Orphanet journal of rare diseases · 2025Article
- Defining the Chronic Complexities of hEDS and HSD: A Global Survey of Diagnostic Challenges, Life-Long Comorbidities, and Unmet Needs.Journal of clinical medicine · 2025Article
- The Financial Impact of Ehlers-Danlos Syndromes on Patients in the United States in 2022.Mayo Clinic proceedings. Innovations, quality & outcomes · 2025Article
- Hypermobile type Ehlers-Danlos syndrome and generalized hypermobile spectrum disorder treatment preferences - a cross-sectional survey of patients.Rheumatology international · 2025Article
- Localized and historical hypermobile spectrum disorders share self-reported symptoms and comorbidities with hEDS and HSD.Frontiers in medicine · 2025Article
- Symptomatic joint hypermobility is not a barrier to attendance, graduation, or satisfaction for adults participating in a multidisciplinary pain rehabilitation program.Frontiers in pain research (Lausanne, Switzerland) · 2025Article
- Defining a core outcome set for hypermobility spectrum disorders and hypermobile Ehlers-Danlos syndrome: A Delphi consensus study.Clinical rheumatology · 2024Article
- Self-Perception of Physical Problems in Patients with Non-Vascular Type of Ehlers-Danlos Syndrome: A Qualitative Study.Healthcare (Basel, Switzerland) · 2024Article
- Social media use by patients with hypermobile Ehlers-Danlos syndrome.Molecular genetics & genomic medicine · 2024Article
- Assessment of gait mechanics and muscle strength in hypermobile Ehlers Danlos Syndrome.Clinical biomechanics (Bristol, Avon) · 2024Article
Corrections and comments
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Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Diagnosing hypermobile Ehlers-Danlos syndrome (hEDS) remains challenging, despite new 2017 criteria. Patients not fulfilling these criteria are considered to have hypermobile spectrum disorder (HSD). Our first aim was to evaluate whether patients hEDS were more severely affected and had higher prevalence of extra-articular manifestations than HSD. Second aim was to compare their outcome after coordinated physical therapy. Patients fulfilling hEDS/HSD criteria were included in this real-life prospective cohort (November 2017/April 2019). They completed a 16-item Clinical Severity Score (CSS-16). We recorded bone involvement, neuropathic pain (DN4) and symptoms of mast cell disorders (MCAS) as extra-articular manifestations. After a standardized initial evaluation (T0), all patients were offered the same coordinated physical therapy, were followed-up at 6 months (T1) and at least 1 year later (T2), and were asked whether or not their condition had subjectively improved at T2. We included 97 patients (61 hEDS, 36 HSD). Median age was 40 (range 18-73); 92.7% were females. Three items from CSS-16 (pain, motricity problems, and bleeding) were significantly more severe with hEDS than HSD. Bone fragility, neuropathic pain and MCAS were equally prevalent. At T2 (20 months [range 18-26]) 54% of patients reported improvement (no difference between groups). On multivariable analysis, only family history of hypermobility predicted (favorable) outcome (p = 0.01). hEDS and HDS patients showed similar disease severity score except for pain, motricity problems and bleeding, and similar spectrum of extra-articular manifestations. Long-term improvement was observed in > 50% of patients in both groups. These results add weight to a clinical pragmatic proposition to consider hEDS/HSD as a single entity that requires the same treatments.
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