Advances in the treatment of patients with Ehlers-Danlos Syndromes and musculoskeletal pathology
[English resources only] This resource hub was created to complement the presentation on Ehlers-Danlos Syndromes and musculoskeletal pathology, organized by SICOT. Here, you'll find a curated collection of articles and research to help deepen your understanding and support early diagnosis and treatment.
MEDICAL ARTICLES
Defining the Chronic Complexities of hEDS and HSD: A Global Survey of Diagnostic Challenges, Life-Long Comorbidities, and Unmet NeedsDaylor, V.; Griggs, M.; Weintraub, A.; Byrd, R.; Petrucci, T.; Huff, M.; Byerly, K.; Fenner, R.; Severance, S.; Griggs, C.; et al. Defining the Chronic Complexities of hEDS and HSD: A Global Survey of Diagnostic Challenges, Life-Long Comorbidities, and Unmet Needs. J. Clin. Med. 2025, 14, 5636. https://doi.org/10.3390/jcm14165636
The Internet Knows More Than My Physician: Qualitative Interview Study of People With Rare Diseases and How They Use Online Support GroupsAshtari S, Taylor A. The Internet Knows More Than My Physician: Qualitative Interview Study of People With Rare Diseases and How They Use Online Support Groups. J Med Internet Res 2022;24(8):e39172. URL: https://www.jmir.org/2022/8/e39172. DOI: 10.2196/39172
Pain intensity in anatomical regions in relation to psychological factors in hypermobile Ehlers-Danlos syndromeOrenius T, von Smitten-Stubb K, Kautiainen H, Montin L, Bulbena A, Lindgren KA. Pain intensity in anatomical regions in relation to psychological factors in hypermobile Ehlers-Danlos syndrome. Scand J Pain. 2025 Jun 16;25(1).
Health care supply in patients with Ehlers-Danlos syndromes and generalized hypermobility spectrum disorder: a German perspectiveRauterberg, J., Hock, M., Kernich, N. et al. Health care supply in patients with Ehlers-Danlos syndromes and generalized hypermobility spectrum disorder: a German perspective. Orphanet J Rare Dis 20, 436 (2025). https://doi.org/10.1186/s13023-025-03937-4
TOOLS
The Spider: a visual, multisystemic symptom impact questionnaire for people with hypermobility-related disorders-validation in adultsEwer ER, De Pauw R, Kazkazk H, Ninis N, Rowe P, Simmonds JV, De Wandele I. The Spider: a visual, multisystemic symptom impact questionnaire for people with hypermobility-related disorders-validation in adults. Clin Rheumatol. 2024 Sep;43(9):3005-3017. doi: 10.1007/s10067-024-07071-7. Epub 2024 Jul 31. PMID: 39085705; PMCID: PMC11330398.
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