{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,17]],"date-time":"2026-07-17T15:06:47Z","timestamp":1784300807941,"version":"3.55.0"},"reference-count":25,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2026,4,21]],"date-time":"2026-04-21T00:00:00Z","timestamp":1776729600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,4,21]],"date-time":"2026-04-21T00:00:00Z","timestamp":1776729600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Haemophilia"],"published-print":{"date-parts":[[2026,7]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Patient registries capture disease related information and provide a valuable source for real\u2010world data on rare diseases and their management. The Swiss Haemophilia Registry (SHR) was established in 2015 on the basis of a new Swiss federal human research act. It includes patients with inherited bleeding disorders, namely haemophilia A and B, von Willebrand disease (VWD), other rare bleeding disorders, and platelet function disorders.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aim<\/jats:title>\n                    <jats:p>To describe the bleeding disorder landscape in Switzerland.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>The SHR is an observational, prospective, longitudinal, multi\u2010centre national registry. Individual patient data is collected annually and includes patient demographics, comorbidities, bleeding events and treatment.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>By 2023, 929 patients were included in the SHR, with 60% diagnosed with haemophilia A, 17% with haemophilia B, and 15% with VWD. The cohort was predominantly male (87%), and 75% were adults. Median follow\u2010up was 5.8 years (IQR 3.35\u20137.22). The prevalence of target joints in 2023 was 2%, with no affected children. Annual inhibitor prevalence in haemophilia patients was 1\u20132%. The SHR illustrates clearly the transition of prophylaxis products from plasma\u2010derived to extended half\u2010life factor products, and non\u2010factor products, mirroring the global treatment evolution, and trends in individualised and patient\u2010centred haemophilia management.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>The SHR provides real\u2010world evidence on haemophilia care in Switzerland and documents major improvements in treatment and patient outcomes over the past decade. Future expansion will be more inclusive of VWD, rare bleeding disorders, and specifically women with bleeding disorders. This will enhance the value of the SHR as a comprehensive national resource.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hae.70294","type":"journal-article","created":{"date-parts":[[2026,4,21]],"date-time":"2026-04-21T15:10:07Z","timestamp":1776784207000},"page":"923-932","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["The Swiss Haemophilia Registry\u2013Report From the First 8 Years"],"prefix":"10.1111","volume":"32","author":[{"given":"Alessandra","family":"Bosch","sequence":"first","affiliation":[{"name":"Department of Haematology University Children's Hospital Zurich  Zurich Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lorenzo","family":"Alberio","sequence":"additional","affiliation":[{"name":"Service and Central Laboratory of Haematology Lausanne University Hospital (CHUV) and University of Lausanne (UNIL)  Lausanne Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Pierre","family":"Fontana","sequence":"additional","affiliation":[{"name":"Division of Angiology and Haemostasis, Faculty of Medicine University Hospitals of Geneva and Geneva Platelet Group  Geneva Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lukas","family":"Graf","sequence":"additional","affiliation":[{"name":"Eastern Switzerland Haemophilia and Haemostasis Centre Centre For Laboratory Medicine  St. Gallen Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Johanna A. Kremer","family":"Hovinga","sequence":"additional","affiliation":[{"name":"Department of Hematology and Central Hematology Laboratory Inselspital, Bern University Hospital, University of Bern  Bern Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nicolas von der","family":"Weid","sequence":"additional","affiliation":[{"name":"Department of Pediatric Hematology\u2010Oncology University Children's Hospital Basel (UKBB) and University of Basel  Basel Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mattia","family":"Rizzi","sequence":"additional","affiliation":[{"name":"Paediatric Haematology\u2010Oncology Unit Lausanne University Hospital (CHUV) and University of Lausanne (UNIL)  Lausanne Switzerland"},{"name":"Pediatric Institute of Southern Switzerland Ente Ospedaliero Cantonale  Bellinzona 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