Health care supply in patients with Ehlers-Danlos syndromes and generalized hypermobility spectrum disorder: a German perspective
This is the first study providing an insight on the healthcare supply of EDS/HSD patients in Germany. Participants in our survey had a much longer "diagnostic journey" than the one in previous studies and suffered from high morbidity despite high healthcare utilization. Our results point to the urgent necessity of a better coordinated, multidisciplinary care for patients with these complex genodermatoses including innovative political structures, further research and international networking.
Authors
- Vanessa Löw (ORCID: https://orcid.org/0000-0001-7113-3132)
- Nikolaus Kernich (ORCID: https://orcid.org/0000-0001-8540-5725)
- Arim Shukri (ORCID: https://orcid.org/0000-0003-3709-3493)
- Henning Klapproth (ORCID: https://orcid.org/0000-0003-1966-3069)
- Michaela Henning (ORCID: https://orcid.org/0000-0002-1031-5140)
- Jonas Rauterberg (ORCID: https://orcid.org/0000-0001-9796-1235)
- Iliana Tantcheva‐Poór
- Marie Hock
Institutions
- University of Cologne (DE)
- Institute of Energy Economics at the University of Cologne (DE)
- University Hospital Cologne (DE)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2025-08-16
- DOI
- https://doi.org/10.1186/s13023-025-03937-4
- Citations
- 1
- Primary Topic
- Connective tissue disorders research
- Type
- article
- Field-Weighted Citation Impact
- 1.82
Funders
- Universitätsklinikum Köln