Evidence map›Paper›PMID 38310850›Full record

ArticleHormone research in paediatrics2025

Multi-Stakeholder Opinion Statement on the Care of Individuals Born with Differences of Sex Development: Common Ground and Opportunities for Improvement.

Martine Cools, Earl Y Cheng, Joanne Hall, Julie Alderson, Anne-Marie Amies Oelschlager, Adam H Balen, Yee-Ming Chan, Mitchell E Geffner, Claus H Gravholt, Tülay Güran and 14 more

Open access · goldAbstract read
In one paragraph

Article in Hormone research in paediatrics, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.

0numbers the graph read from it
0cells of the map it votes in
12citing papers in PubMed
5.8field-weighted citation impact, top 3% of its field
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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

12 citing papers in PubMed, 25 citations in OpenAlex.

  1. Article
  2. Review
  3. Article
  4. Review
  5. Article
  6. Differences of sex development.Nature reviews. Disease primers · 2025
    Review
  7. Article
  8. Article
  9. Review
  10. Review
  11. Article
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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

24 authors at 12 institutions in 7 countries.

Martine CoolsDepartment of Internal Medicine and Pediatrics, Ghent University, Ghent, Belgium.
Earl Y ChengDivision of Urology, Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois, USA.
Joanne HallLiving with CAH, Bedford, UK.
Julie AldersonPsychological Health Services, University Hospitals Bristol and Weston, Bristol, UK.
Anne-Marie Amies OelschlagerDepartment of Obstetrics and Gynecology, University of Washington School of Medicine, Seattle, Washington, USA.
Adam H BalenDepartment of Reproductive Medicine, Leeds Teaching Hospitals, Leeds, UK.
Yee-Ming ChanDivision of Endocrinology, Department of Pediatrics, Boston Children's Hospital, Boston, Massachusetts, USA.
Mitchell E GeffnerThe Saban Research Institute, Children's Hospital Los Angeles, Keck School of Medicine of USC, Los Angeles, California, USA.
Claus H GravholtDepartment of Endocrinology, Aarhus University Hospital, Aarhus, Denmark.
Tülay GüranDepartment of Pediatric Endocrinology and Diabetes, School of Medicine, Marmara University, Istanbul, Turkey.
Piet HoebekeDepartment of Urology, Ghent University Hospital, Ghent University, Ghent, Belgium.
Peter LeeDivision of Endocrinology, Department of Pediatrics, Penn State College of Medicine, Hershey, Pennsylvania, USA.
Ellie Magrittedsdfamilies, Edinburgh, UK.
Dina MatosCongenital Adrenal hyperplasia Research, Education and Support Foundation (CARES Foundation), Union, New Jersey, USA.
Ken McElreaveyHuman Developmental Genetics, Institut Pasteur, Paris, France.
Heino F L Meyer-BahlburgNew York State Psychiatric Institute and Department of Psychiatry, Vagelos College of Physicians and Surgeons of Columbia University, New York, New York, USA.
Richard C RinkDivision of Pediatric Urology, Riley Hospital for Children at IU Health, Indianapolis, Indiana, USA.
Alexander SpringerDepartment of Pediatric Surgery, Medical University Vienna, Vienna, Austria.
Konrad M SzymanskiDivision of Pediatric Urology, Riley Hospital for Children at IU Health, Indianapolis, Indiana, USA.
Eric VilainInstitute for Clinical and Translational Science, University of California Irvine, Irvine, California, USA.
Jo Williamsdsdfamilies, Edinburgh, UK.
Katja P WolffenbuttelDepartment of Urology and Pediatric Urology, Erasmus University Hospital, Sophia Children's Hospital, Rotterdam, The Netherlands.
David E SandbergSusan B. Meister Child Health and Evaluation Research Center, Ann Arbor, Michigan, USA.
Ramnath SubramaniamDepartment of Paediatric Urology, Leeds Teaching Hospitals NHS Trust, Leeds, UK.
Ghent University Hospital · BELeeds Teaching Hospitals NHS Trust · GBAarhus University Hospital · DKBoston Children's Hospital · USInstitut Pasteur · FRMarmara University · TRMedical University of Vienna · ATNorthwestern University · USPenn State Milton S. Hershey Medical Center · USUniversity of California, Irvine · USUniversity of Michigan–Ann Arbor · USUniversity of Washington · US

Funding

Disorders/Differences of Sex Development (DSD) - Translational Research NetworkR01HD093450 · NICHD · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI SANDBERG, DAVID ERIC, VILAIN, ERIC J. · 2018 to 2022
$3.9M
Pathways to care and health outcomes among DSD patientsR01HD092595 · NICHD · EMORY UNIVERSITY · PI GOODMAN, MICHAEL, SANDBERG, DAVID ERIC · 2017 to 2021
$3.1M
Decision-Making for Patients Born with Differences of Sex Development (DSD)R01HD086583 · NICHD · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI SANDBERG, DAVID ERIC · 2016 to 2021
$2.8M
NICHD NIH HHS R01 HD086583NICHD NIH HHS R01 HD092595NICHD NIH HHS R01 HD093450
6 · The paper itself

Abstract

backgroundIn the last 15 years, the care provided for individuals born with differences of sex development (DSD) has evolved, with a strong emphasis on interdisciplinary approaches. However, these developments have not convinced some stakeholders to embrace the current model of care. This care model has also paid insufficient attention to socio-cultural differences and global inequalities. SUMMARY: This article is an opinion statement, resulting from in-depth discussions and reflection among clinicians, patients, and family support organizations based in the USA and Europe, where we seek areas of common ground and try to identify opportunities to further develop resources. The product of these conversations is summarized in 10 panels. The corresponding sections provide additional discussion on some of the panel items. KEY MESSAGES: Participants identified areas of agreement, gained a deeper understanding of the reasons behind disagreements on certain matters, and identified the necessary steps to foster future consensus. We offer preliminary recommendations for guiding clinical management and resource allocation. By promoting a broader consensus, we aim to enhance the quality of care and well-being for individuals of all ages who have a DSD.

backgroundIn the last 15 years, the care provided for individuals born with differences of sex development (DSD) has evolved, with a strong emphasis on interdisciplinary approaches. However, these developments have not convinced some stakeholders to embrace the current model of care. This care model has also paid insufficient attention to socio-cultural differences and global inequalities. SUMMARY: This article is an opinion statement, resulting from in-depth discussions and reflection among clinicians, patients, and family support organizations based in the USA and Europe, where we seek areas of common ground and try to identify opportunities to further develop resources. The product of these conversations is summarized in 10 panels. The corresponding sections provide additional discussion on some of the panel items. KEY MESSAGES: Participants identified areas of agreement, gained a deeper understanding of the reasons behind disagreements on certain matters, and identified the necessary steps to foster future consensus. We offer preliminary recommendations for guiding clinical management and resource allocation. By promoting a broader consensus, we aim to enhance the quality of care and well-being for individuals of all ages who have a DSD.

Indexed as

Disorders of Sex DevelopmentChildEuropeFemaleHumansMalePractice Guidelines as TopicReview Literature as TopicActivismDifferences of sex developmentDisorders of sex developmentInterdisciplinary teamIntersexPeer supportPsychosocial care

Identifiers

PMID38310850
PMCPMC11965812
OpenAlexW4391636524

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

Registered trials

None linked

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.