{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,25]],"date-time":"2026-09-25T00:53:54Z","timestamp":1790297634735,"version":"4.1.0"},"reference-count":35,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2020,6,4]],"date-time":"2020-06-04T00:00:00Z","timestamp":1591228800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Haemophilia"],"published-print":{"date-parts":[[2020,7]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction<\/jats:title><jats:p>The World Federation of Hemophilia (WFH) strives to achieve care for all patients with inherited bleeding disorders through research, advocacy, capacity building and education. The WFH developed and implemented the Annual Global Survey (AGS), through which comprehensive demographic and treatment data on bleeding disorders are collected each year from its constituent non\u2010governmental national organizations.<\/jats:p><\/jats:sec><jats:sec><jats:title>Aim<\/jats:title><jats:p>To describe the development, methodology and achievements of the WFH AGS over the past 20\u00a0years.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>The AGS is a yearly cross\u2010sectional survey. Data are collected using a standardized form (available online and on paper), quality checked and reviewed, and published in English, French and Spanish. Over time, the AGS has been modified in response to changes in treatment landscape or emerging new issues.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Over the past 20\u00a0years, the AGS has reported an increase in the number of countries participating in the survey, a tripling in the number of people identified with rare bleeding disorders and an increase in the amount of factor used to treat people with haemophilia. Yet, a large treatment inequity gap still exists across the globe. In response to this gap, the WFH has analysed the AGS reports which has stimulated further development in quality of care indicators, estimates of the global prevalence of haemophilia, patient\u2010level data collection efforts like the World Bleeding Disorders Registry and the Gene Therapy Registry.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>The AGS has provided evidence to support research, programme planning and development activities of the WFH.<\/jats:p><\/jats:sec>","DOI":"10.1111\/hae.14012","type":"journal-article","created":{"date-parts":[[2020,6,4]],"date-time":"2020-06-04T17:19:47Z","timestamp":1591291187000},"page":"591-600","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":91,"title":["The World Federation of Hemophilia Annual Global Survey 1999\u20102018"],"prefix":"10.1111","volume":"26","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2856-329X","authenticated-orcid":false,"given":"Jeffrey S.","family":"Stonebraker","sequence":"first","affiliation":[{"name":"Department of Business Management Poole College of Management North Carolina State University Raleigh NC USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paula H. B.","family":"Bolton\u2010Maggs","sequence":"additional","affiliation":[{"name":"University of Manchester Manchester UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mark","family":"Brooker","sequence":"additional","affiliation":[{"name":"Formerly World Federation of Hemophilia Montreal Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bruce","family":"Evatt","sequence":"additional","affiliation":[{"name":"Formerly Centers for Disease Control and Prevention Atlanta GA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3331-8766","authenticated-orcid":false,"given":"Alfonso","family":"Iorio","sequence":"additional","affiliation":[{"name":"Department of Health Research Methods, Evidence, and Impact McMaster University Hamilton ON Canada"},{"name":"McMaster\u2010Bayer Endowed Research Chair in Clinical Epidemiology of Congenital Bleeding Disorders Department of Medicine McMaster University Hamilton ON Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7622-7939","authenticated-orcid":false,"given":"Michael","family":"Makris","sequence":"additional","affiliation":[{"name":"Department of Infection, Immunity and Cardiovascular Disease University of Sheffield Sheffield UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9780-6972","authenticated-orcid":false,"given":"Brian","family":"O'Mahony","sequence":"additional","affiliation":[{"name":"Irish Haemophilia Society Dublin Ireland"},{"name":"Trinity College Dublin Ireland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0934-0680","authenticated-orcid":false,"given":"Mark W.","family":"Skinner","sequence":"additional","affiliation":[{"name":"Department of Health Research Methods, Evidence, and Impact McMaster University Hamilton ON Canada"},{"name":"Institute for Policy Advancement Ltd Washington DC USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8372-4474","authenticated-orcid":false,"given":"Donna","family":"Coffin","sequence":"additional","affiliation":[{"name":"World Federation of Hemophilia Montr\u00e9al QC Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3310-328X","authenticated-orcid":false,"given":"Glenn F.","family":"Pierce","sequence":"additional","affiliation":[{"name":"World Federation of Hemophilia Montr\u00e9al QC Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ellia","family":"Tootoonchian","sequence":"additional","affiliation":[{"name":"World Federation of Hemophilia Montr\u00e9al QC Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2020,6,4]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.7326\/M19-1208"},{"key":"e_1_2_9_3_1","volume-title":"WFH Global Survey on Hemophilia 1999 edition","author":"World Federation of Hemophilia","year":"1999"},{"key":"e_1_2_9_4_1","volume-title":"Report on the WFH Global Survey 2000","author":"World Federation of Hemophilia","year":"2000"},{"key":"e_1_2_9_5_1","volume-title":"Report on the WFH Global Survey 2001","author":"World Federation of Hemophilia","year":"2001"},{"key":"e_1_2_9_6_1","volume-title":"Report on the WFH Global Survey 2002","author":"World Federation of Hemophilia","year":"2002"},{"key":"e_1_2_9_7_1","volume-title":"Report on the Annual Global Survey 2018","author":"World Federation of Hemophilia","year":"2019"},{"key":"e_1_2_9_8_1","unstructured":"World Federation of Hemophilia.Reports on the annual global survey 2003\u20132018.Montreal:WFH;2020.https:\/\/www.wfh.org\/en\/our\u2010work\u2010research\u2010data\/annual\u2010global\u2010survey. 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