{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,21]],"date-time":"2026-10-21T14:59:40Z","timestamp":1792594780360,"version":"4.5.0"},"reference-count":34,"publisher":"Wiley","license":[{"start":{"date-parts":[[2026,1,26]],"date-time":"2026-01-26T00:00:00Z","timestamp":1769385600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2026,1,26]],"date-time":"2026-01-26T00:00:00Z","timestamp":1769385600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/100009467","name":"University of the Witwatersrand, Johannesburg","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100009467","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Haemophilia"],"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Major advances in haemophilia care have not translated equitably across all populations. Individuals with rare bleeding disorders (RBDs), people living in low\u2010 and lower\u2010middle\u2010income countries (LMICs) and women and girls with inherited bleeding disorders (WGWBD) continue to face significant diagnostic, therapeutic and research disadvantages.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To critically evaluate the current evidence base for these underserved groups, identify persistent knowledge and implementation gaps and outline strategic priorities to strengthen diagnostic capacity, research infrastructure and equity in care delivery.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>A comprehensive literature review of studies published between 2018 and 2025 was conducted across PubMed, Scopus and Google Scholar, focusing on epidemiology, diagnostic pathways, clinical outcomes, access to treatment and effectiveness of targeted interventions.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Approximately 75% of individuals with inherited bleeding disorders in LMICs remain undiagnosed, with diagnostic delays historically lasting decades. RBDs account for 3%\u20135% of bleeding disorders but are characterised by limited natural history data and minimal comparative\u2010effectiveness research. WGWBD experience median diagnostic delays of 8 years, with heavy menstrual bleeding affecting 55%\u201374% and significantly impairing quality of life. Training initiatives, gynaecology\u2010based screening and international registries have improved case detection, though robust evidence on long\u2010term sustainability and cost\u2010effectiveness is lacking.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Strengthening diagnostic systems, expanding harmonised registries, advancing implementation research and prioritising equity\u2010driven strategies are essential to closing critical evidence gaps and improving care for these underserved populations<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hae.70214","type":"journal-article","created":{"date-parts":[[2026,1,26]],"date-time":"2026-01-26T10:34:36Z","timestamp":1769423676000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Enhancing the Evidence for Care in Underserved Bleeding Disorders Communities"],"prefix":"10.1111","author":[{"given":"Johnny","family":"Mahlangu","sequence":"first","affiliation":[{"name":"Department of Molecular Medicine and Haematology Faculty of Health Sciences University of the Witwatersrand  Johannesburg South Africa"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,1,26]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.rpth.2023.102264"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1080\/17474086.2023.2293092"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/HAE.13722"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.6084\/m9.figshare.22277830"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood\u20102023\u2010191068"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/HAE.14094"},{"key":"e_1_2_11_8_1","volume-title":"Report on the Annual Global Survey 2022","author":"World Federation of Hemophilia","year":"2023"},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.53350\/pjmhs2023174569"},{"issue":"5","key":"e_1_2_11_10_1","first-page":"311","article-title":"Role of Race and Ethnicity in the Presentation and Management of Rare Bleeding Disorders","volume":"27","author":"Peyvandi F.","year":"2020","journal-title":"Current Opinion in Hematology"},{"key":"e_1_2_11_11_1","doi-asserted-by":"publisher","DOI":"10.7759\/cureus"},{"key":"e_1_2_11_12_1","doi-asserted-by":"publisher","DOI":"10.18203\/2349\u20103933.IJAM20202589"},{"key":"e_1_2_11_13_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.15123"},{"issue":"3","key":"e_1_2_11_14_1","first-page":"565","article-title":"Challenges in Treatment of Rare Bleeding Disorders","volume":"51","author":"Dorgalaleh A.","year":"2021","journal-title":"Journal of Thrombosis and Thrombolysis"},{"key":"e_1_2_11_15_1","doi-asserted-by":"publisher","DOI":"10.1111\/hex.12083"},{"issue":"1","key":"e_1_2_11_16_1","first-page":"45","article-title":"Prospective Cohort Study of Severe Haemophilia in Developing Countries [abstract]","volume":"25","author":"HAEMOcare Study Group","year":"2019","journal-title":"Haemophilia"},{"issue":"3","key":"e_1_2_11_17_1","first-page":"23","article-title":"Improving Diagnosis of Haemophilia in Mali Through an Integrated Awareness and Training Programme","volume":"24","author":"Diarra M.","year":"2018","journal-title":"Haemophilia"},{"key":"e_1_2_11_18_1","volume-title":"Women and Bleeding Disorders: Patient Survey Results","author":"European Haemophilia Consortium","year":"2019"},{"key":"e_1_2_11_19_1","doi-asserted-by":"publisher","DOI":"10.1111\/HAE.13900"},{"key":"e_1_2_11_20_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood-2005-09-3879"},{"key":"e_1_2_11_21_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2010.02269.x"},{"key":"e_1_2_11_22_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2516.2010.02315.x"},{"issue":"1","key":"e_1_2_11_23_1","first-page":"8842","article-title":"Quality Improvement Screening Program for Bleeding Disorders in Gynaecology Clinics [abstract]","volume":"140","year":"2022","journal-title":"Blood"},{"key":"e_1_2_11_24_1","doi-asserted-by":"publisher","DOI":"10.3390\/jcm6040045"},{"key":"e_1_2_11_25_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood-2013-10-529974"},{"key":"e_1_2_11_26_1","doi-asserted-by":"publisher","DOI":"10.1089\/hum.2021.287"},{"key":"e_1_2_11_27_1","doi-asserted-by":"publisher","DOI":"10.1097\/MLR.0b013e3182408812"},{"key":"e_1_2_11_28_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjgh-2019-001909"},{"issue":"6","key":"e_1_2_11_29_1","article-title":"Governance of Transnational Global Health Research in Low\u2010Income and Middle\u2010Income Countries","volume":"4","author":"Pratt B.","year":"2019","journal-title":"BMJ Glob Health"},{"key":"e_1_2_11_30_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2016-012332"},{"key":"e_1_2_11_31_1","doi-asserted-by":"publisher","DOI":"10.1126\/science.1076899"},{"key":"e_1_2_11_32_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(10)61920-4"},{"key":"e_1_2_11_33_1","volume-title":"Designing and Conducting Mixed Methods Research","author":"Creswell J. W.","year":"2017"},{"key":"e_1_2_11_34_1","doi-asserted-by":"publisher","DOI":"10.2105\/AJPH.2009.184036"},{"key":"e_1_2_11_35_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.c4739"}],"container-title":["Haemophilia"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hae.70214","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/hae.70214","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hae.70214","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,1,26]],"date-time":"2026-01-26T10:34:38Z","timestamp":1769423678000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/hae.70214"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,1,26]]},"references-count":34,"alternative-id":["10.1111\/hae.70214"],"URL":"https:\/\/doi.org\/10.1111\/hae.70214","archive":["Portico"],"relation":{},"ISSN":["1351-8216","1365-2516"],"issn-type":[{"value":"1351-8216","type":"print"},{"value":"1365-2516","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,1,26]]},"assertion":[{"value":"2025-11-24","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-01-12","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-01-26","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"hae.70214"}}