Evidence map›Paper›PMID 42363793›Full record

Observational studyPain research & management2026

Characteristics of Pain in Patients Diagnosed With Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders. An Observational Study.

Mattia Morri, Morena Tremosini, Cristiana Forni, Alice Moroni, Elena Pedrini, Alessia Di Cecco, Maria Gnoli, Luca Sangiorgi

Registry-linked trialAbstract readObservational Study
In one paragraph

Observational study in Pain research & management, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04133272 (Registry of Ehlers-Danlos Syndrome That Collects Clinical, Functional, Genetic, Genealogical, Imaging, Surgical, Treatment, Quality of Life Data. Data Are Linked to Patients' Biological Samples, When Available), which is not on this map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

NCT04133272 recruitingnot on this map

Registry of Ehlers-Danlos Syndrome That Collects Clinical, Functional, Genetic, Genealogical, Imaging, Surgical, Treatment, Quality of Life Data. Data Are Linked to Patients' Biological Samples, When Available

Typeobservational_patient_registrySponsorLuca SangiorgiRan2014 to 2033Enrolled3,000ConditionsEhlers-Danlos Syndrome
3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Observational
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

Mattia MorriServizio di Assistenza Infermieristica Tecnica e Riabilitativa, IRCCS Istituto Ortopedico Rizzoli, Bologna, 40136, Italy, ior.it.ORCID https://orcid.org/0000-0002-4429-9927
Morena TremosiniStruttura Complessa Malattie Rare Scheletriche, IRCCS Istituto Ortopedico Rizzoli, Bologna, 40136, Italy, ior.it.
Cristiana ForniServizio di Assistenza Infermieristica Tecnica e Riabilitativa, IRCCS Istituto Ortopedico Rizzoli, Bologna, 40136, Italy, ior.it.ORCID https://orcid.org/0000-0003-4611-9261
Alice MoroniStruttura Complessa Malattie Rare Scheletriche, IRCCS Istituto Ortopedico Rizzoli, Bologna, 40136, Italy, ior.it.ORCID https://orcid.org/0000-0002-4777-341X
Elena PedriniStruttura Complessa Malattie Rare Scheletriche, IRCCS Istituto Ortopedico Rizzoli, Bologna, 40136, Italy, ior.it.ORCID https://orcid.org/0000-0001-9980-7741
Alessia Di CeccoStruttura Complessa Malattie Rare Scheletriche, IRCCS Istituto Ortopedico Rizzoli, Bologna, 40136, Italy, ior.it.ORCID https://orcid.org/0009-0002-5691-0786
Maria GnoliStruttura Complessa Malattie Rare Scheletriche, IRCCS Istituto Ortopedico Rizzoli, Bologna, 40136, Italy, ior.it.ORCID https://orcid.org/0000-0002-5907-7470
Luca SangiorgiStruttura Complessa Malattie Rare Scheletriche, IRCCS Istituto Ortopedico Rizzoli, Bologna, 40136, Italy, ior.it.ORCID https://orcid.org/0000-0003-3658-1209

Funding

Ministry of Health 5M-2023-23687106
6 · The paper itself

Abstract

backgroundThis study aimed to describe pain characteristics in patients diagnosed with Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorders (HSD) and to identify factors associated with moderate to severe pain at diagnosis.

methodsNinety-six patients were retrospectively identified through the Ce.Ma.R.S. registry (2017-2022). Pain intensity was assessed at first evaluation using a Numeric Rating Scale (0-10). Patients were grouped into no/mild pain and moderate/severe pain. Clinical and demographic data were collected, and variables significant in univariate analysis were included in multivariate logistic regression.

resultsAt diagnosis, 49% of patients reported moderate to severe pain. Independent predictors were older age (OR = 1.06; 95% CI: 1.03-1.10), diagnosis of hypermobile EDS (OR = 6.25; 95% CI: 1.31-29.74), and headache (OR = 3.97; 95% CI: 1.14-13.82). Use of pain medications, particularly paracetamol and NSAIDs, was strongly associated with higher pain severity (p < 0.001).

conclusionPain is a common and early symptom in EDS and HSD. Older patients, those with hypermobile EDS, and those with headache are at greater risk of severe pain. Early, multidisciplinary pain management, including pharmacological treatment, physiotherapy, and headache-specific strategies, should be prioritized to improve outcomes and reduce long-term disability.

trial registrationClinicalTrials.gov identifier: NCT04133272.

Indexed as

Ehlers-Danlos SyndromeJoint InstabilityPainAdolescentAdultFemaleHumansMalePain MeasurementRetrospective StudiesYoung AdultEhlers–Danlos syndromehypermobility spectrum disorderspainrisk factors

Identifiers

PMID42363793
PMCPMC13309903

What OpenQuestion holds

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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.