{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,2]],"date-time":"2026-07-02T10:28:42Z","timestamp":1782988122136,"version":"3.54.5"},"reference-count":56,"publisher":"Oxford University Press (OUP)","issue":"2","license":[{"start":{"date-parts":[[2026,1,12]],"date-time":"2026-01-12T00:00:00Z","timestamp":1768176000000},"content-version":"vor","delay-in-days":5,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2026,1,7]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Since long-term outcome data for individuals with differences of sex development (DSD) remain limited, current consensus statements emphasize the need for standardized, longitudinal, multidisciplinary care, and systematic outcome evaluation to improve healthcare delivery and research for this heterogeneous and rare group of conditions.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aim<\/jats:title>\n                    <jats:p>To describe the design and implementation of a structured, multidisciplinary follow-up program for children and adolescents with DSD in a tertiary care setting, integrating a health intelligence approach to facilitate data-driven care and research.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>The program was developed at Amsterdam UMC, Emma Children\u2019s Hospital, as part of the so-called Follow Me initiative. Patients were identified using International Classification of Diseases Tenth Revision codes and categorized into 3 diagnostic groups: XX and XY DSD, Turner syndrome, and sex chromosome trisomies including Klinefelter syndrome (SCT). Standardized care pathways were developed in collaboration with the multidisciplinary DSD team (MDT), based on existing literature. An automated data pipeline was built to securely transfer clinical data to a hospital-wide data warehouse.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Outcomes<\/jats:title>\n                    <jats:p>A reproducible framework for cohort identification, care pathways for structured, multidisciplinary care, and an automated data-infrastructure for clinical outcome collection and monitoring.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>In January 2024, 620 patients under the age of 18 were identified as eligible for inclusion in the program: 466 in the XX and XY DSD group, 72 with Turner syndrome, and 82 in the SCT group. Standardized follow-up pathways were implemented for each group. Interactive dashboards were developed to visualize real-time clinical outcomes, which are used during MDT meetings and annual care evaluations to monitor quality and effectiveness of care.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Clinical implications<\/jats:title>\n                    <jats:p>This study demonstrates how integrating multidisciplinary care with a health intelligence program enables data-driven medicine to promote consistent, high-quality care for individuals with DSD and generate valuable data for clinical evaluation and innovation, and research purposes.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Strengths and limitations<\/jats:title>\n                    <jats:p>This is the first reported initiative translating existing recommendations into a practical framework that supports structured, multidisciplinary care across all diagnostic groups and facilitates systematic automated data collection. Nevertheless, the current implementation is limited to pediatric care within a single center, though expansion is feasible.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>This study presents a framework for standardized, long-term care for children and adolescents with DSD, supported by health intelligence, that meets the need for longitudinal outcome data, enhances care quality, and drives innovation.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1093\/jsxmed\/qdaf382","type":"journal-article","created":{"date-parts":[[2025,12,17]],"date-time":"2025-12-17T12:58:44Z","timestamp":1765976324000},"source":"Crossref","is-referenced-by-count":3,"title":["Standardized multidisciplinary care for children and adolescents with differences of sex development: a health intelligence approach"],"prefix":"10.1093","volume":"23","author":[{"ORCID":"https:\/\/orcid.org\/0009-0001-8494-795X","authenticated-orcid":false,"given":"Lieve A","family":"Willemsen","sequence":"first","affiliation":[{"name":"Department of Pediatric Endocrinology, Emma Children\u2019s Hospital, Amsterdam UMC location University of Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Follow-Me program & Emma Neuroscience Group, Department of Pediatrics, Emma Children\u2019s Hospital, Amsterdam UMC location University of Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Center of Expertise on Atypical Sex and Gender Development, Amsterdam UMC location University of Amsterdam and location Vrije Universiteit Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Amsterdam Public Health , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Amsterdam Reproduction & Development , 1105 AZ, Amsterdam ,","place":["The Netherlands"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Matthijs","family":"Stoter","sequence":"additional","affiliation":[{"name":"Follow-Me program & Emma Neuroscience Group, Department of Pediatrics, Emma Children\u2019s Hospital, Amsterdam UMC location University of Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emmy","family":"van den Boogaard","sequence":"additional","affiliation":[{"name":"Center of Expertise on Atypical Sex and Gender Development, Amsterdam UMC location University of Amsterdam and location Vrije Universiteit Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Amsterdam Reproduction & Development , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Department of Obstetrics and Gynaecology, Amsterdam UMC location University of Amsterdam and location Vrije Universiteit Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stephanie","family":"Both","sequence":"additional","affiliation":[{"name":"Center of Expertise on Atypical Sex and Gender Development, Amsterdam UMC location University of Amsterdam and location Vrije Universiteit Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Amsterdam Reproduction & Development , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Department of Sexology and Psychosomatic Gynecology, Amsterdam UMC location University of Amsterdam and location Vrije Universiteit Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Luitzen A","family":"Groen","sequence":"additional","affiliation":[{"name":"Center of Expertise on Atypical Sex and Gender Development, Amsterdam UMC location University of Amsterdam and location Vrije Universiteit Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Amsterdam Reproduction & Development , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Department of Urology, Emma Children\u2019s Hospital, Amsterdam UMC location University of Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Baudewijntje P C","family":"Kreukels","sequence":"additional","affiliation":[{"name":"Center of Expertise on Atypical Sex and Gender Development, Amsterdam UMC location University of Amsterdam and location Vrije Universiteit Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Amsterdam Public Health , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Amsterdam Reproduction & Development , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Department of Medical Psychology, Amsterdam UMC location Vrije Universiteit Amsterdam , 1081 HV, Amsterdam ,","place":["The Netherlands"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kimberly C","family":"Kuiper","sequence":"additional","affiliation":[{"name":"TRIXY Center of Expertise, Leiden University Treatment and Expertise Center (LUBEC) , 2300 RB, Leiden ,","place":["The Netherlands"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julia N","family":"Nieuwersteeg","sequence":"additional","affiliation":[{"name":"Center of Expertise on Atypical Sex and Gender Development, Amsterdam UMC location University of Amsterdam and location Vrije Universiteit Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Department of Child and Adolescent Psychiatry and Psychosocial Care, Emma Children\u2019s Hospital, Amsterdam UMC location University of Amsterdam and location Vrije Universiteit Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Noortje A","family":"Roussel","sequence":"additional","affiliation":[{"name":"Center of Expertise on Atypical Sex and Gender Development, Amsterdam UMC location University of Amsterdam and location Vrije Universiteit Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Department of Sexology and Psychosomatic Gynecology, Amsterdam UMC location University of Amsterdam and location Vrije Universiteit Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Liesbeth","family":"van der Sluijs Veer","sequence":"additional","affiliation":[{"name":"Center of Expertise on Atypical Sex and Gender Development, Amsterdam UMC location University of Amsterdam and location Vrije Universiteit Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Department of Child and Adolescent Psychiatry and Psychosocial Care, Emma Children\u2019s Hospital, Amsterdam UMC location University of Amsterdam and location Vrije Universiteit Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6161-4116","authenticated-orcid":false,"given":"Annelou L C","family":"de Vries","sequence":"additional","affiliation":[{"name":"Center of Expertise on Atypical Sex and Gender Development, Amsterdam UMC location University of Amsterdam and location Vrije Universiteit Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Amsterdam Public Health , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Amsterdam Reproduction & Development , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Department of Child and Adolescent Psychiatry and Psychosocial Care, Emma Children\u2019s Hospital, Amsterdam UMC location University of Amsterdam and location Vrije Universiteit Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Petra J G","family":"Zwijnenburg","sequence":"additional","affiliation":[{"name":"Center of Expertise on Atypical Sex and Gender Development, Amsterdam UMC location University of Amsterdam and location Vrije Universiteit Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Amsterdam Reproduction & Development , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Department of Human Genetics, Amsterdam UMC location University of Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3620-5617","authenticated-orcid":false,"given":"Martin","family":"den Heijer","sequence":"additional","affiliation":[{"name":"Center of Expertise on Atypical Sex and Gender Development, Amsterdam UMC location University of Amsterdam and location Vrije Universiteit Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Amsterdam Public Health , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Department of Endocrinology and Metabolism, Amsterdam UMC location University of Amsterdam and location Vrije Universiteit Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jaap","family":"Oosterlaan","sequence":"additional","affiliation":[{"name":"Follow-Me program & Emma Neuroscience Group, Department of Pediatrics, Emma Children\u2019s Hospital, Amsterdam UMC location University of Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Amsterdam Reproduction & Development , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Clinical Neuropsychology Section, Vrije Universiteit Amsterdam , 1081 HV, Amsterdam ,","place":["Netherlands"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sabine E","family":"Hannema","sequence":"additional","affiliation":[{"name":"Department of Pediatric Endocrinology, Emma Children\u2019s Hospital, Amsterdam UMC location University of Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Center of Expertise on Atypical Sex and Gender Development, Amsterdam UMC location University of Amsterdam and location Vrije Universiteit Amsterdam , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Amsterdam Reproduction & Development , 1105 AZ, Amsterdam ,","place":["The Netherlands"]},{"name":"Amsterdam Gastroenterology Endocrinology Metabolism , 1105 AZ, Amsterdam ,","place":["The Netherlands"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"Follow Me DSD study group","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2026,1,12]]},"reference":[{"issue":"3","key":"2026011201261459700_ref1","doi-asserted-by":"publisher","first-page":"148","DOI":"10.1016\/j.jpurol.2006.03.004","article-title":"Consensus statement on management of intersex disorders","volume":"2","author":"Hughes","year":"2006","journal-title":"J Pediatr Urol"},{"issue":"1","key":"2026011201261459700_ref2","doi-asserted-by":"publisher","first-page":"54","DOI":"10.1186\/s12955-018-0881-3","article-title":"Multicentre cross-sectional clinical evaluation study about quality of life in adults with disorders\/differences of sex development (DSD) compared to country specific reference populations (dsd-LIFE)","volume":"16","author":"Rapp","year":"2018","journal-title":"Health Qual Life Outcomes"},{"issue":"1","key":"2026011201261459700_ref3","doi-asserted-by":"publisher","first-page":"527","DOI":"10.1186\/s12913-018-3342-0","article-title":"Quality of health care in adolescents and adults with disorders\/differences of sex development (DSD) in six European countries (dsd-LIFE)","volume":"18","author":"Thyen","year":"2018","journal-title":"BMC Health Serv Res"},{"issue":"5","key":"2026011201261459700_ref4","doi-asserted-by":"publisher","first-page":"777","DOI":"10.1016\/j.jsxm.2018.02.021","article-title":"Gender dysphoria and gender change in disorders of sex development\/intersex conditions: results from the dsd-LIFE study","volume":"15","author":"Kreukels","year":"2018","journal-title":"J Sex Med"},{"issue":"8","key":"2026011201261459700_ref5","doi-asserted-by":"publisher","first-page":"688","DOI":"10.1080\/0092623X.2019.1610123","article-title":"Sexuality in adults with differences\/disorders of sex development (DSD): findings from the dsd-LIFE study","volume":"45","author":"Kreukels","year":"2019","journal-title":"J Sex Marital Ther"},{"issue":"6","key":"2026011201261459700_ref6","doi-asserted-by":"publisher","first-page":"818","DOI":"10.1111\/cen.14528","article-title":"Society for Endocrinology UK Guidance on the initial evaluation of a suspected difference or disorder of sex development (revised 2021)","volume":"95","author":"Ahmed","year":"2021","journal-title":"Clin Endocrinol"},{"issue":"2","key":"2026011201261459700_ref7","doi-asserted-by":"publisher","DOI":"10.1159\/000536296","article-title":"Multi-stakeholder opinion statement on the care of individuals born with differences of sex development: common ground and opportunities for improvement","volume":"98","author":"Cools","journal-title":"Horm Res Paediatr"},{"issue":"7","key":"2026011201261459700_ref8","doi-asserted-by":"publisher","first-page":"415","DOI":"10.1038\/s41574-018-0010-8","article-title":"Caring for individuals with a difference of sex development (DSD): a consensus statement","volume":"14","author":"Cools","year":"2018","journal-title":"Nat Rev Endocrinol"},{"issue":"5","key":"2026011201261459700_ref9","doi-asserted-by":"publisher","first-page":"545","DOI":"10.1530\/EJE-19-0363","article-title":"Standardised data collection for clinical follow-up and assessment of outcomes in differences of sex development (DSD): recommendations from the COST action DSDnet","volume":"181","author":"Fl\u00fcck","year":"2019","journal-title":"Eur J Endocrinol"},{"issue":"3","key":"2026011201261459700_ref10","doi-asserted-by":"publisher","first-page":"225","DOI":"10.1080\/17446651.2022.2072829","article-title":"Delivery of multidisciplinary care in the field of differences and disorders of sex development (DSD)","volume":"17","author":"Lucas-Herald","year":"2022","journal-title":"Expert Rev Endocrinol Metab"},{"issue":"2","key":"2026011201261459700_ref11","doi-asserted-by":"publisher","first-page":"187","DOI":"10.1016\/j.beem.2009.11.004","article-title":"Impact of the consensus statement and the new DSD classification system","volume":"24","author":"Pasterski","year":"2010","journal-title":"Best Pract Res Clin Endocrinol Metab"},{"issue":"6","key":"2026011201261459700_ref12","doi-asserted-by":"publisher","first-page":"G53","DOI":"10.1093\/ejendo\/lvae050","article-title":"Clinical practice guidelines for the care of girls and women with Turner syndrome","volume":"190","author":"Gravholt","year":"2024","journal-title":"Eur J Endocrinol"},{"issue":"11","key":"2026011201261459700_ref13","doi-asserted-by":"publisher","first-page":"4043","DOI":"10.1210\/jc.2018-01865","article-title":"Congenital adrenal hyperplasia due to steroid 21-hydroxylase deficiency: an endocrine society clinical practice guideline","volume":"103","author":"Speiser","year":"2018","journal-title":"J Clin Endocrinol Metab"},{"issue":"1","key":"2026011201261459700_ref14","doi-asserted-by":"publisher","first-page":"145","DOI":"10.1111\/andr.12909","article-title":"European academy of andrology guidelines on Klinefelter syndrome endorsing organization: European Society of Endocrinology","volume":"9","author":"Zitzmann","year":"2021","journal-title":"Andrology"},{"issue":"9","key":"2026011201261459700_ref15","doi-asserted-by":"publisher","first-page":"e108702","DOI":"10.1371\/journal.pone.0108702","article-title":"Unbiased identification of patients with disorders of sex development","volume":"9","author":"Hanauer","year":"2014","journal-title":"PLoS One"},{"issue":"1","key":"2026011201261459700_ref16","doi-asserted-by":"publisher","first-page":"52","DOI":"10.1186\/s12902-017-0198-y","article-title":"Participation of adults with disorders\/differences of sex development (DSD) in the clinical study dsd-LIFE: design, methodology, recruitment, data quality and study population","volume":"17","author":"R\u00f6hle","year":"2017","journal-title":"BMC Endocr Disord"},{"issue":"3","key":"2026011201261459700_ref17","doi-asserted-by":"publisher","first-page":"158","DOI":"10.1159\/000442975","article-title":"Global disorders of sex development update since 2006: perceptions, approach and care","volume":"85","author":"Lee","year":"2016","journal-title":"Hormone Res Paediatr"},{"issue":"5","key":"2026011201261459700_ref18","doi-asserted-by":"publisher","first-page":"387","DOI":"10.1055\/s-0035-1548936","article-title":"Disorders of sex development (DSD): networking and standardization considerations","volume":"47","author":"Sandberg","year":"2015","journal-title":"Horm Metab Res"},{"issue":"2","key":"2026011201261459700_ref19","doi-asserted-by":"publisher","first-page":"bvad153","DOI":"10.1210\/jendso\/bvad153","article-title":"Gonadal function in boys with bilateral undescended testes","volume":"8","author":"Lucas-Herald","year":"2024","journal-title":"J Endocr Soc"},{"issue":"1","key":"2026011201261459700_ref20","doi-asserted-by":"publisher","first-page":"71","DOI":"10.1016\/j.jpurol.2024.09.017","article-title":"Prevalence of disorders of sex development in patients with hypospadias and cryptorchidism","volume":"21","author":"Lavoie","year":"2025","journal-title":"J Pediatr Urol"},{"issue":"4","key":"2026011201261459700_ref21","doi-asserted-by":"publisher","first-page":"334","DOI":"10.1037\/hea0000600","article-title":"Body image and self-esteem in disorders of sex development: a European multicenter study","volume":"37","author":"van de Grift","year":"2018","journal-title":"Health Psychol"},{"issue":"7","key":"2026011201261459700_ref22","doi-asserted-by":"publisher","first-page":"629","DOI":"10.1097\/PSY.0000000000000718","article-title":"Mental health of a large group of adults with disorders of sex development in six European countries","volume":"81","author":"de Vries","year":"2019","journal-title":"Psychosom Med"},{"issue":"5","key":"2026011201261459700_ref23","doi-asserted-by":"publisher","first-page":"1617","DOI":"10.1007\/s10508-018-1357-6","article-title":"Uncertainty and posttraumatic stress: differences between mothers and fathers of infants with disorders of sex development","volume":"48","author":"Delozier","year":"2019","journal-title":"Arch Sex Behav"},{"key":"2026011201261459700_ref24","doi-asserted-by":"publisher","first-page":"111636","DOI":"10.1016\/j.jpsychores.2024.111636","article-title":"Psychological support for individuals with differences of sex development (DSD)","volume":"179","author":"Bennecke","year":"2024","journal-title":"J Psychosom Res"},{"issue":"3","key":"2026011201261459700_ref25","doi-asserted-by":"publisher","first-page":"675","DOI":"10.1007\/s12020-021-02627-y","article-title":"Assessing the health-related management of people with differences of sex development","volume":"71","author":"J\u00fcrgensen","year":"2021","journal-title":"Endocrine"},{"issue":"2","key":"2026011201261459700_ref26","doi-asserted-by":"publisher","first-page":"238","DOI":"10.1159\/000524516","article-title":"I-DSD: the first 10 years","volume":"96","author":"Lucas-Herald","year":"2023","journal-title":"Horm Res Paediatr"},{"issue":"2","key":"2026011201261459700_ref27","doi-asserted-by":"publisher","first-page":"E348","DOI":"10.1210\/jc.2013-2918","article-title":"Novel associations in disorders of sex development: findings from the I-DSD Registry","volume":"99","author":"Cox","year":"2014","journal-title":"J Clin Endocrinol Metab"},{"issue":"1","key":"2026011201261459700_ref28","doi-asserted-by":"publisher","first-page":"191","DOI":"10.1186\/s12913-022-07537-x","article-title":"Implementing structured follow-up of neonatal and paediatric patients: an evaluation of three university hospital case studies using the functional resonance analysis method","volume":"22","author":"Bos","year":"2022","journal-title":"BMC Health Serv Res"},{"issue":"6","key":"2026011201261459700_ref29","doi-asserted-by":"publisher","first-page":"484","DOI":"10.1097\/PCC.0000000000003213","article-title":"Structured multidisciplinary follow-up after pediatric intensive care: a model for continuous data-driven health care innovation","volume":"24","author":"de Sonnaville","year":"2023","journal-title":"Pediatr Crit Care Med"},{"key":"2026011201261459700_ref30"},{"issue":"3 Pt 2","key":"2026011201261459700_ref31","doi-asserted-by":"publisher","first-page":"1003","DOI":"10.1016\/S0022-5347(01)68048-0","article-title":"The incidence of intersexuality in children with cryptorchidism and hypospadias: stratification based on gonadal palpability and meatal position","volume":"162","author":"Kaefer","year":"1999","journal-title":"J Urol"},{"issue":"6","key":"2026011201261459700_ref32","doi-asserted-by":"publisher","first-page":"2649","DOI":"10.1016\/j.juro.2008.08.058","article-title":"The incidence of disorders of sexual differentiation and chromosomal abnormalities of cryptorchidism and hypospadias stratified by meatal location","volume":"180","author":"Cox","year":"2008","journal-title":"J Urol"},{"key":"2026011201261459700_ref33","doi-asserted-by":"publisher","first-page":"527.e1","DOI":"10.1016\/j.jpurol.2019.07.017","article-title":"Yield of modern genetic evaluation for patients with proximal hypospadias and descended gonads","volume":"15","author":"Rowe","year":"2019","journal-title":"J Pediatr Urol"},{"issue":"3","key":"2026011201261459700_ref34","first-page":"245","article-title":"Congenital adrenal hyperplasia due to 21-hydroxylase deficiency","volume":"21","author":"White","year":"2000","journal-title":"Endocr Rev"},{"issue":"11","key":"2026011201261459700_ref35","doi-asserted-by":"publisher","first-page":"2870","DOI":"10.1002\/ajmg.a.37688","article-title":"Expanding the phenotype of triple X syndrome: a comparison of prenatal versus postnatal diagnosis","volume":"170","author":"Wigby","year":"2016","journal-title":"Am J Med Genet A"},{"issue":"1","key":"2026011201261459700_ref36","doi-asserted-by":"publisher","first-page":"156","DOI":"10.1111\/cge.13586","article-title":"A review of neurocognitive functioning of children with sex chromosome trisomies: identifying targets for early intervention","volume":"97","author":"Urbanus","year":"2020","journal-title":"Clin Genet"},{"issue":"5","key":"2026011201261459700_ref37","doi-asserted-by":"publisher","DOI":"10.1530\/EC-22-0494","article-title":"Neurocognitive and behavioral development in young children (1-7 years) with sex chromosome trisomy","volume":"12","author":"van Rijn","year":"2023","journal-title":"Endocr Connect"},{"issue":"6","key":"2026011201261459700_ref38","doi-asserted-by":"publisher","first-page":"851","DOI":"10.1111\/j.1651-2227.2011.02235.x","article-title":"48, XXYY, 48, XXXY and 49, XXXXY syndromes: not just variants of Klinefelter syndrome","volume":"100","author":"Tartaglia","year":"2011","journal-title":"Acta Paediatr"},{"issue":"6","key":"2026011201261459700_ref39","doi-asserted-by":"publisher","first-page":"1595","DOI":"10.1007\/s11136-022-03328-3","article-title":"Development of a standard set of PROs and generic PROMs for Dutch medical specialist care : recommendations from the Outcome-Based Healthcare Program Working Group Generic PROMs","volume":"32","author":"Oude Voshaar","year":"2023","journal-title":"Qual Life Res"},{"issue":"5","key":"2026011201261459700_ref40","doi-asserted-by":"publisher","first-page":"463","DOI":"10.1016\/j.jadohealth.2010.03.007","article-title":"Psychological adjustment and sexual development of adolescents with disorders of sex development","volume":"47","author":"Kleinemeier","year":"2010","journal-title":"J Adolesc Health"},{"key":"2026011201261459700_ref41","author":""},{"key":"2026011201261459700_ref42","volume-title":"Measuring Functioning and Well-Being: The Medical Outcomes Study Approach","author":""},{"issue":"4","key":"2026011201261459700_ref43","doi-asserted-by":"publisher","first-page":"595","DOI":"10.1530\/EC-18-0070","article-title":"Disorders of sex development: timing of diagnosis and management in a single large tertiary center","volume":"7","author":"Kohva","year":"2018","journal-title":"Endocr Connect"},{"issue":"9","key":"2026011201261459700_ref44","doi-asserted-by":"publisher","first-page":"e063409","DOI":"10.1136\/bmjopen-2022-063409","article-title":"Cohort profile: pathways to care among people with disorders of sex development (DSD)","volume":"12","author":"Goodman","year":"2022","journal-title":"BMJ Open"},{"issue":"12","key":"2026011201261459700_ref45","doi-asserted-by":"publisher","first-page":"4532","DOI":"10.1210\/jc.2016-2248","article-title":"Incidence, prevalence, diagnostic delay, and clinical presentation of female 46,XY disorders of sex development","volume":"101","author":"Berglund","year":"2016","journal-title":"J Clin Endocrinol Metab"},{"issue":"8","key":"2026011201261459700_ref46","doi-asserted-by":"publisher","first-page":"1751","DOI":"10.1093\/humrep\/dex210","article-title":"Incidence, prevalence, diagnostic delay, morbidity, mortality and socioeconomic status in males with 46,XX disorders of sex development: a nationwide study","volume":"32","author":"Berglund","year":"2017","journal-title":"Hum Reprod"},{"issue":"1","key":"2026011201261459700_ref47","doi-asserted-by":"publisher","first-page":"56","DOI":"10.1186\/s13023-017-0603-7","article-title":"An assessment of the quality of the I-DSD and the I-CAH registries\u2014international registries for rare conditions affecting sex development","volume":"12","author":"Kourime","year":"2017","journal-title":"Orphanet J Rare Dis"},{"issue":"3","key":"2026011201261459700_ref48","doi-asserted-by":"publisher","first-page":"723","DOI":"10.1007\/s12020-021-02748-4","article-title":"``Good practices'' in pediatric clinical care for disorders\/differences of sex development","volume":"73","author":"Kavanaugh","year":"2021","journal-title":"Endocrine."},{"issue":"6","key":"2026011201261459700_ref49","doi-asserted-by":"publisher","first-page":"699","DOI":"10.1159\/000540596","article-title":"Development of quality indicators to evaluate the quality of care for people with differences of sex development","volume":"98","author":"J\u00fcrgensen","year":"2024","journal-title":"Horm Res Paediatr"},{"issue":"1","key":"2026011201261459700_ref50","doi-asserted-by":"publisher","first-page":"7","DOI":"10.1016\/j.jpurol.2011.08.013","article-title":"A model of delivering multi-disciplinary care to people with 46 XY DSD","volume":"8","author":"Palmer","year":"2012","journal-title":"J Pediatr Urol"},{"key":"2026011201261459700_ref51","doi-asserted-by":"publisher","first-page":"1488411","DOI":"10.3389\/fped.2025.1488411","article-title":"Structured care after a DSD diagnosis in childhood: a mixed methods evaluation of the empower-DSD program","volume":"13","author":"Wechsung","year":"2025","journal-title":"Front Pediatr"},{"issue":"1","key":"2026011201261459700_ref52","doi-asserted-by":"publisher","first-page":"166","DOI":"10.1186\/s12902-022-01079-3","article-title":"Development and evaluation of a patient education programme for children, adolescents, and young adults with differences of sex development (DSD) and their parents: study protocol of empower-DSD","volume":"22","author":"Wiegmann","year":"2022","journal-title":"BMC Endocr Disord"},{"issue":"2","key":"2026011201261459700_ref53","doi-asserted-by":"publisher","first-page":"207","DOI":"10.1159\/000527433","article-title":"Challenges waiting for an adult with DSD","volume":"96","author":"Nowotny","year":"2023","journal-title":"Horm Res Paediatr"},{"key":"2026011201261459700_ref54","author":"DSDCare. The Project \u201cDSDCare\u201d"},{"issue":"1","key":"2026011201261459700_ref55","doi-asserted-by":"publisher","first-page":"460","DOI":"10.1186\/s13023-024-03467-5","article-title":"Quality of care for people with differences of sex development (DSD) in Germany","volume":"19","author":"Schnoor","year":"2024","journal-title":"Orphanet J Rare Dis"},{"issue":"3","key":"2026011201261459700_ref56","doi-asserted-by":"publisher","DOI":"10.1530\/EC-24-0647","article-title":"Satisfaction with health care among people with differences of sex development (DSD) in Germany","volume":"14","author":"Schnoor","year":"2025","journal-title":"Endocr Connect"}],"container-title":["The Journal of Sexual Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/jsm\/article-pdf\/23\/2\/qdaf382\/66357005\/qdaf382.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/jsm\/article-pdf\/23\/2\/qdaf382\/66357005\/qdaf382.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,1,12]],"date-time":"2026-01-12T06:26:19Z","timestamp":1768199179000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/jsm\/article\/doi\/10.1093\/jsxmed\/qdaf382\/8422382"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,1,7]]},"references-count":56,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2026,1,7]]}},"URL":"https:\/\/doi.org\/10.1093\/jsxmed\/qdaf382","relation":{},"ISSN":["1743-6095","1743-6109"],"issn-type":[{"value":"1743-6095","type":"print"},{"value":"1743-6109","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2026,2]]},"published":{"date-parts":[[2026,1,7]]},"article-number":"qdaf382"}}