ArticleRheumatology international2023
Clinical characteristics of patients with hypermobile type Ehlers-Danlos syndrome (hEDS) and generalized hypermobility spectrum disorders (G-HSD): an online survey.
Article in Rheumatology international, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.
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
12 citing papers in PubMed, 17 citations in OpenAlex.
- 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
- Generalized joint hypermobility and neck pain: Prevalence and functional correlates from a community-based sample.Clinical biomechanics (Bristol, Avon) · 2026Article
- 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
- Health experiences and outcomes of autistic and non-autistic adults with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder.BMC medicine · 2026Article
- Priority Musculoskeletal Health Research Questions for People With Generalized Joint Hypermobility: An International Delphi Study.Arthritis care & research · 2025Article
- Depressive symptoms are highly prevalent and associated with fatigue and pain catastrophizing in the Hypermobility Spectrum Disorders and hypermobile Ehlers Danlos syndrome: a cross-sectional study.Rheumatology international · 2025Article
- Navigating HOPE (Hypermobile Online Pain managemEnt): Perspectives and Experiences From People With Hypermobile Ehlers-Danlos Syndrome or Hypermobility Spectrum Disorder on a Condition-Specific Online Pain Management Programme.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Falls and balance impairment; what and how has this been measured in adults with joint hypermobility? A scoping review.BMC musculoskeletal disorders · 2025Article
- Hypermobile type Ehlers-Danlos syndrome and generalized hypermobile spectrum disorder treatment preferences - a cross-sectional survey of patients.Rheumatology international · 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
- Self-Perception of Physical Problems in Patients with Non-Vascular Type of Ehlers-Danlos Syndrome: A Qualitative Study.Healthcare (Basel, Switzerland) · 2024Article
- Cardiovascular Symptoms, Dysautonomia, and Quality of Life in Adult and Pediatric Patients with Hypermobile Ehlers-Danlos Syndrome: A Brief Review.Current cardiology reviews · 2024Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors at 1 institution in 1 country.
Funding
Abstract
To examine the perspective of individuals with Hypermobile Ehlers-Danlos Syndrome (hEDS) and Generalized Hypermobility Spectrum Disorder (G-HSD), needed to help identify priorities and improve the lives of people living with these conditions. We conducted an online survey between November 2021 and January 2023. Participants were recruited through the Ehlers-Danlos Society's Research Surveys website. We obtained 483 responses and 396 were analyzed. 80% of the survey's respondents were individuals with hEDS, 90% were females, 30% were between 21 and 30, and 76% lived in North America, with 85% of the participants living in North America indicated being White or European American. Participants reported exercising from none to less than three times per week, with no physical therapy treatment. Ninety-eight percent of participants reported pain mainly at the neck (76%), lower (76%) and upper back (66%), knees (64%), shoulders (60%), and hips (60%). Approximately 80% of participants reported fatigue, joint hypermobility, joint instability, interference with daily activities, gastrointestinal problems, orthostatic hypotension, muscle weakness, and emotional distress. About 60% of respondents indicated walking issues, balance issues, and reduced joint proprioception. Nearly 40% of participants reported pelvic floor dysfunction and cardiovascular problems. Participants with hEDS and G-HSD reported pain on an average (SD) of 6.4 (± 1.3) and 5.9 (± 1.5) days in a typical week, respectively. People with hEDS and G-HSD desperately need more effective treatment options, a better diagnostic process, and education among health care providers.
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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.