{"database":"biostudies-literature","file_versions":[],"scores":null,"additional":{"omics_type":["Unknown"],"volume":["7(8)"],"submitter":["Coffin D"],"pubmed_abstract":["<h4>Background</h4>The prevalence of hemophilia varies globally, with close to 100% of patients diagnosed in high-income countries and as low as 12% diagnosed in lower-income countries. These inequalities in the care of people with hemophilia exist across various care indicators.<h4>Objectives</h4>This analysis aims to describe the clinical care outcomes of patients in the World Bleeding Disorders Registry (WBDR).<h4>Methods</h4>In 2018, the World Federation of Hemophilia developed a global registry, the WBDR, to permit hemophilia treatment centers to collect clinical data, monitor patient care longitudinally, and identify gaps in management and treatment.<h4>Results</h4>As of July 18, 2022, 10,276 people with hemophilia were enrolled from 87 hemophilia treatment centers in 40 countries. N"],"journal":["Research and practice in thrombosis and haemostasis"],"pagination":["102264"],"full_dataset_link":["https://www.ebi.ac.uk/biostudies/studies/S-EPMC10772874"],"repository":["biostudies-literature"],"pubmed_title":["The World Federation of Hemophilia World Bleeding Disorders Registry: insights from the first 10,000 patients."],"pmcid":["PMC10772874"],"pubmed_authors":["Songthawee N","Adeyemo T","John J","Shah S","Awodu O","Owusu-Ofori S","Youttananukorn T","Razali H","Palascak J","Nchimba L","Tzong TJ","Nigam RK","Narayana Pillai V","Sidarthan N","Hailemariam S","Udo C","Meknassi N","Saengboon S","Pierce GF","Sosothikul D","Narbekov T","Biswas A","Aziz A","Iorio A","Djenouni A","Nwagha T","Keikhaei B","Ruchutrakul T","Barsallo N","Borhany M","Nagao A","Harper P","Ayoub E","Shikuku T","Hermans C","Nguyen HM","Wong L","Kotila T","Obeida A","Castillo D","Surapolchai P","Chuansumrit A","Mbanya D","Gouider E","Catarino C","Mlombe Y","World Bleeding Disorders Registry Participating Investigators","Zaman Miah M","Nasution D","Philip C","Micic D","Nguyen Thi M","Alexis C","Yuguda S","Dakik P","Hassan M","Mekjarusgul P","El Ekiaby A","Darwish Mohamad Ibrahim A","See Guan T","Lambert C","Hassan T","Konkle B","Hernandez F","Si Yuan N","Siew Looi T","Pereira T","Motusheva R","Blatny J","Rakoto Alson OA","Gwarzo D","Imran A","Natesirinilkul R","Rabbani G","Abdel Mohsen M","N'dogomo M","Ai Sim G","Suryani S","Pellegrini G","Liam C","Ruiz-Saez A","Coffin D","Fawcett K","Neme D","Tootoonchian E","Al-Rahal N","Coetzee M","Njuguna F","Marhaeni W","El Khorassani M","Poudyal B","Salhi N","Aysarieva B","Zafar T","Nguyen P","Ping CL","Satti M","Blair A","Ganieva A","Munube D","Najmi S","Ali T","Govindan S","Diop S","Thevarajah A","Syakira NA"],"additional_accession":[]},"is_claimable":false,"name":"The World Federation of Hemophilia World Bleeding Disorders Registry: insights from the first 10,000 patients.","description":"<h4>Background</h4>The prevalence of hemophilia varies globally, with close to 100% of patients diagnosed in high-income countries and as low as 12% diagnosed in lower-income countries. These inequalities in the care of people with hemophilia exist across various care indicators.<h4>Objectives</h4>This analysis aims to describe the clinical care outcomes of patients in the World Bleeding Disorders Registry (WBDR).<h4>Methods</h4>In 2018, the World Federation of Hemophilia developed a global registry, the WBDR, to permit hemophilia treatment centers to collect clinical data, monitor patient care longitudinally, and identify gaps in management and treatment.<h4>Results</h4>As of July 18, 2022, 10,276 people with hemophilia were enrolled from 87 hemophilia treatment centers in 40 countries. N","dates":{"release":"2023-01-01T00:00:00Z","publication":"2023 Nov","modification":"2025-04-04T09:27:52.886Z","creation":"2025-04-04T09:27:52.886Z"},"accession":"S-EPMC10772874","cross_references":{"pubmed":["38193052"],"doi":["10.1016/j.rpth.2023.102264"]}}