ArticleOrphanet journal of rare diseases2016
Current models of care for disorders of sex development - results from an International survey of specialist centres.
Article in Orphanet journal of rare diseases, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 34 papers, 1 of them a synthesis that pooled 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.
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
34 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Clinical practice guidelines for the management of differences of sex development in Japan.Endocrine journal · 2026Guideline
- Fertility preservation in girls and adolescents with Turner syndrome: lessons for reproductive care in differences of sex development - a mini-review.Frontiers in endocrinology · 2026Review
- Clinical practice guidelines for the management of differences of sex development in Japan.Clinical pediatric endocrinology : case reports and clinical investigations : official journal of the Japanese Society for Pediatric Endocrinology · 2026Review
- A Comprehensive Child Psychiatry Approach for Managing Patients with Differences of Sexual Development in a Multidisciplinary Setting: An Alternative Follow-up ModelJournal of clinical research in pediatric endocrinology · 2025Article
- Differences of sex development.Nature reviews. Disease primers · 2025Review
- Challenges in Care Provision for Children and Adolescents With Differences of Sex Development.Clinical endocrinology · 2025Article
- Satisfaction with health care among people with differences of sex development (DSD) in Germany.Endocrine connections · 2025Article
- Structured care after a DSD diagnosis in childhood: a mixed methods evaluation of the Empower-DSD program.Frontiers in pediatrics · 2025Article
- Multi-Stakeholder Opinion Statement on the Care of Individuals Born with Differences of Sex Development: Common Ground and Opportunities for Improvement.Hormone research in paediatrics · 2025Article
- Quality of care for people with differences of sex development (DSD) in Germany.Orphanet journal of rare diseases · 2024Article
- Approaches in care for people with variations of sex characteristics-focus groups in the European context on the strengths and challenges of multidisciplinary teams.Sexual medicine · 2024Article
- Individuals with numerical and structural variations of sex chromosomes: interdisciplinary management with focus on fertility potential.Frontiers in endocrinology · 2023Review
- Diagnosis of DSD in Children-Development of New Tools for a Structured Diagnostic and Information Management Program within the Empower-DSD Study.Journal of clinical medicine · 2022Article
- Differences/Disorders of Sex Development: Medical Conditions at the Intersection of Sex and Gender.Annual review of clinical psychology · 2022Review
- Congenital Adrenal Hyperplasia-Current Insights in Pathophysiology, Diagnostics, and Management.Endocrine reviews · 2022Review
- Towards improved genetic diagnosis of human differences of sex development.Nature reviews. Genetics · 2021Review
- An appraisal of current service delivery and future models of care for young people with gender dysphoria.European journal of pediatrics · 2021Article
- Assessing the health-related management of people with differences of sex development.Endocrine · 2021Review
- Under-reported aspects of diagnosis and treatment addressed in the Dutch-Flemish guideline for comprehensive diagnostics in disorders/differences of sex development.Journal of medical genetics · 2020Review
- Serum Anti-Müllerian Hormone in the Prediction of Response to hCG Stimulation in Children With DSD.The Journal of clinical endocrinology and metabolism · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
11 authors.
Funding
Abstract
backgroundTo explore the current models of practice in centres delivering specialist care for children with disorders of sex development (DSD), an international survey of 124 clinicians, identified through DSDnet and the I-DSD Registry, was performed in the last quarter of 2014.
resultsA total of 78 (63 %) clinicians, in 75 centres, from 38 countries responded to the survey. A formal national network for managing DSD was reported to exist in 12 (32 %) countries. The paediatric specialists routinely involved in the initial evaluation of a newborn included: endocrinologist (99 %), surgeon/urologist (95 %), radiologist (93 %), neonatologist (91 %), clinical geneticist (81 %) and clinical psychologist (69 %). A team consisting of paediatric specialists in endocrinology, surgery/urology, clinical psychology, and nursing was only possible in 31 (41 %) centres. Of the 75 centres, 26 (35 %) kept only a local DSD registry and 40 (53 %) shared their data in a multicentre DSD registry. Attendance in local, national and international DSD-related educational programs was reported by 69, 78 and 84 % clinicians, respectively. Participation in audits/quality improvement exercises in DSD care was reported by 14 (19 %) centres. In addition to complex biochemistry and molecular genetic investigations, 40 clinicians (51 %) also had access to next generation sequencing. A genetic test was reported to be more preferable than biochemical tests for diagnosing 5-alpha reductase deficiency and 17-beta hydroxysteroid dehydrogenase 3 deficiency by 50 and 55 % clinicians, respectively.
conclusionDSD centres report a high level of interaction at an international level, have access to specialist staff and are increasingly relying on molecular genetics for routine diagnostics. The quality of care provided by these centres locally requires further exploration.
Indexed as
Identifiers
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.