ArticleOrphanet journal of rare diseases2024
Quality of care for people with differences of sex development (DSD) in Germany.
Article in Orphanet journal of rare diseases, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 3 papers.
What it found
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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.
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Who cites it
3 citing papers in PubMed.
- Impact of the Empower-DSD training program on the health-related quality of life in children, adolescents and young adults with differences of sex development and their parents.Frontiers in pediatrics · 2026Trial
- Correction to: Quality of care for people with differences of sex development (DSD) in Germany.Orphanet journal of rare diseases · 2025Article
- Structured care after a DSD diagnosis in childhood: a mixed methods evaluation of the Empower-DSD program.Frontiers in pediatrics · 2025Article
Corrections and comments
- Erratum issued
Authors and funding
6 authors.
Funding
Abstract
backgroundPeople with "Differences of Sex Development" (DSD) require comprehensive, specialised, and individualised medical and psychological care. This is often perceived as inadequate by those affected. Therefore, the German Federal Ministry of Health funded the project DSDCare which aimed to improve the quality of care for people with DSD over the lifespan in Germany.
methodIndicators of structural, process, and outcome quality were defined, which are used to evaluate the quality of care. The indicators of structural quality are collected once a year from ten participating centres. Based on the "Open Source Registry System for Rare Diseases (OSSE)", a DSD-specific registry (DSDReg) was developed, in which patient-related care data are recorded in order to be able to assess the process and outcome quality. Furthermore, patient-reported outcomes are collected directly from the patients by means of questionnaires. The data are reported back to the participating centres in an annual benchmarking.
resultsTwenty-five indicators of structural quality were defined, twelve indicators of process quality and ten of outcome quality. A total of 477 patients were registered in DSDReg in the period from May 2021 till October 2022. The mean age is 16 years; the most common diagnosis groups are 46,XY DSD (34.8%), followed by 46,XX DSD (33.3%) and chromosomal DSD (27.5%). Patient numbers vary across centres from N = 10 to N = 131. Questionnaires are available from 316 (66.2%) affected individuals, including 122 from adults, 120 from children or adolescents with DSD, and 191 from parents. Preliminary results show heterogeneity between centres in both data quality and quality of care.
conclusionsThe DSDReg is well established in the DSDCare project as a quality assurance tool with continuously increasing recruitment figures. The implemented quality indicators are applicable, enable a comparison between the participating centres and will foreseeably lead to an improvement of the care of patients with DSD. A long-term continuation of the registry after the end of the initial study period is therefore indicated.
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