{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,11,11]],"date-time":"2025-11-11T12:45:00Z","timestamp":1762865100276,"version":"build-2065373602"},"reference-count":23,"publisher":"Elsevier BV","issue":"7","license":[{"start":{"date-parts":[[2023,10,1]],"date-time":"2023-10-01T00:00:00Z","timestamp":1696118400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2023,10,1]],"date-time":"2023-10-01T00:00:00Z","timestamp":1696118400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2023,9,7]],"date-time":"2023-09-07T00:00:00Z","timestamp":1694044800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100003246","name":"Nederlandse Organisatie voor Wetenschappelijk Onderzoek","doi-asserted-by":"publisher","award":["NWA.1160.18.038"],"award-info":[{"award-number":["NWA.1160.18.038"]}],"id":[{"id":"10.13039\/501100003246","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["rpthjournal.org","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Research and Practice in Thrombosis and Haemostasis"],"published-print":{"date-parts":[[2023,10]]},"DOI":"10.1016\/j.rpth.2023.102201","type":"journal-article","created":{"date-parts":[[2023,9,15]],"date-time":"2023-09-15T06:28:44Z","timestamp":1694759324000},"page":"102201","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":3,"title":["Patient-relevant health outcomes for von Willebrand disease, platelet function disorders, and rare bleeding disorders: a Delphi study"],"prefix":"10.1016","volume":"7","author":[{"given":"Evelien S.","family":"van Hoorn","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Hester F.","family":"Lingsma","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Marjon H.","family":"Cnossen","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Samantha C.","family":"Gouw","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"78","reference":[{"key":"10.1016\/j.rpth.2023.102201_bib1","doi-asserted-by":"crossref","first-page":"121","DOI":"10.1542\/pir.29.4.121","article-title":"Bleeding disorders","volume":"29","author":"Sharathkumar","year":"2008","journal-title":"Pediatr Rev"},{"key":"10.1016\/j.rpth.2023.102201_bib2","doi-asserted-by":"crossref","first-page":"248","DOI":"10.1111\/j.1538-7836.2003.t01-1-00553.x","article-title":"North American Rare Bleeding Disorder Study G. Rare bleeding disorder registry: deficiencies of factors II, V, VII, X, XIII, fibrinogen and dysfibrinogenemias","volume":"2","author":"Acharya","year":"2004","journal-title":"J\u00a0Thromb Haemost"},{"key":"10.1016\/j.rpth.2023.102201_bib3","doi-asserted-by":"crossref","first-page":"603","DOI":"10.1111\/j.1365-2141.2006.06343.x","article-title":"A\u00a0review of inherited platelet disorders with guidelines for their management on behalf of the UKHCDO","volume":"135","author":"Bolton-Maggs","year":"2006","journal-title":"Br J Haematol"},{"key":"10.1016\/j.rpth.2023.102201_bib4","doi-asserted-by":"crossref","first-page":"2052","DOI":"10.1182\/blood-2014-08-532820","article-title":"Rare bleeding disorders: diagnosis and treatment","volume":"125","author":"Palla","year":"2015","journal-title":"Blood"},{"key":"10.1016\/j.rpth.2023.102201_bib5","doi-asserted-by":"crossref","DOI":"10.1016\/j.eclinm.2021.100726","article-title":"Major differences in clinical presentation, diagnosis and management of men and women with autosomal inherited bleeding disorders","volume":"32","author":"Atiq","year":"2021","journal-title":"EClinicalMedicine"},{"key":"10.1016\/j.rpth.2023.102201_bib6","first-page":"1","article-title":"The strategy that will fix health care","volume":"91","author":"Porter","year":"2013","journal-title":"Harv Bus Rev"},{"key":"10.1016\/j.rpth.2023.102201_bib7","doi-asserted-by":"crossref","first-page":"24","DOI":"10.1186\/s12913-016-1957-6","article-title":"The case of value-based healthcare for people living with complex long-term conditions","volume":"17","author":"Elf","year":"2017","journal-title":"BMC Health Serv Res"},{"key":"10.1016\/j.rpth.2023.102201_bib8","doi-asserted-by":"crossref","first-page":"504","DOI":"10.1056\/NEJMp1511701","article-title":"Standardizing patient outcomes measurement","volume":"374","author":"Porter","year":"2016","journal-title":"N\u00a0Engl J Med"},{"key":"10.1016\/j.rpth.2023.102201_bib9","doi-asserted-by":"crossref","first-page":"1103","DOI":"10.1001\/jama.297.10.1103","article-title":"How physicians can change the future of health care","volume":"297","author":"Porter","year":"2007","journal-title":"JAMA"},{"key":"10.1016\/j.rpth.2023.102201_bib10","doi-asserted-by":"crossref","first-page":"682","DOI":"10.1097\/ACM.0000000000003122","article-title":"Defining and implementing value-based health care: a strategic framework","volume":"95","author":"Teisberg","year":"2020","journal-title":"Acad Med"},{"key":"10.1016\/j.rpth.2023.102201_bib11","doi-asserted-by":"crossref","first-page":"873","DOI":"10.1111\/hae.13456","article-title":"Patient-centred value framework for haemophilia","volume":"24","author":"O'Mahony","year":"2018","journal-title":"Haemophilia"},{"key":"10.1016\/j.rpth.2023.102201_bib12","doi-asserted-by":"crossref","DOI":"10.1002\/rth2.12488","article-title":"Patient-relevant health outcomes for hemophilia care: development of an international standard outcomes set","volume":"5","author":"van Balen","year":"2021","journal-title":"Res Pract Thromb Haemost"},{"key":"10.1016\/j.rpth.2023.102201_bib13","doi-asserted-by":"crossref","first-page":"652","DOI":"10.1002\/rth2.12331","article-title":"Clinical outcomes in hemophilia: towards development of a core set of standardized outcome measures for research","volume":"4","author":"Dover","year":"2020","journal-title":"Res Pract Thromb Haemost"},{"key":"10.1016\/j.rpth.2023.102201_bib14","doi-asserted-by":"crossref","first-page":"197","DOI":"10.1111\/hae.14492","article-title":"Patient-reported outcomes in autosomal inherited bleeding disorders: a systematic literature review","volume":"28","author":"van Hoorn","year":"2022","journal-title":"Haemophilia"},{"key":"10.1016\/j.rpth.2023.102201_bib15","doi-asserted-by":"crossref","first-page":"2394","DOI":"10.1111\/jth.15424","article-title":"Health and treatment outcomes of patients with hemophilia in the Netherlands, 1972-2019","volume":"19","author":"Hassan","year":"2021","journal-title":"J\u00a0Thromb Haemost"},{"key":"10.1016\/j.rpth.2023.102201_bib16","doi-asserted-by":"crossref","first-page":"916","DOI":"10.1097\/TA.0000000000003546","article-title":"Core outcome measures for research in traumatic injury survivors: the National Trauma Research Action Plan modified Delphi consensus study","volume":"92","author":"Herrera-Escobar","year":"2022","journal-title":"J\u00a0Trauma Acute Care Surg"},{"key":"10.1016\/j.rpth.2023.102201_bib17","doi-asserted-by":"crossref","first-page":"3425","DOI":"10.1016\/j.sapharm.2021.10.008","article-title":"Identifying outcome measures for atrial fibrillation value-based contracting using the Delphi method","volume":"18","author":"Swart","year":"2022","journal-title":"Res Social Adm Pharm"},{"year":"2022","key":"10.1016\/j.rpth.2023.102201_bib18"},{"key":"10.1016\/j.rpth.2023.102201_bib19","doi-asserted-by":"crossref","first-page":"e167","DOI":"10.1111\/hae.13504","article-title":"Core outcome set for gene therapy in haemophilia: results of the coreHEM multistakeholder project","volume":"24","author":"Iorio","year":"2018","journal-title":"Haemophilia"},{"key":"10.1016\/j.rpth.2023.102201_bib20","doi-asserted-by":"crossref","first-page":"58","DOI":"10.1186\/s40814-018-0253-0","article-title":"The Patient Reported Outcomes, Burdens and Experiences (PROBE) Project: development and evaluation of a questionnaire assessing patient-reported outcomes in people with haemophilia","volume":"4","author":"Skinner","year":"2018","journal-title":"Pilot Feasibility Stud"},{"key":"10.1016\/j.rpth.2023.102201_bib21","series-title":"Tidy\u2019s Physiotherapy","first-page":"1","article-title":"The responsibilities of being a physiotherapist","author":"Sedgley","year":"2013"},{"key":"10.1016\/j.rpth.2023.102201_bib22","series-title":"A Practical Approach","first-page":"69","article-title":"Role of Epidemiology in the Biopharmaceutical Industry","author":"Oleske","year":"2019"},{"key":"10.1016\/j.rpth.2023.102201_bib23","doi-asserted-by":"crossref","first-page":"37","DOI":"10.1186\/1471-2288-5-37","article-title":"Stability of response characteristics of a Delphi panel: application of bootstrap data expansion","volume":"5","author":"Akins","year":"2005","journal-title":"BMC Med Res Methodol"}],"container-title":["Research and Practice in Thrombosis and Haemostasis"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S2475037923004582?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S2475037923004582?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,11,11]],"date-time":"2025-11-11T12:30:22Z","timestamp":1762864222000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S2475037923004582"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,10]]},"references-count":23,"journal-issue":{"issue":"7","published-print":{"date-parts":[[2023,10]]}},"alternative-id":["S2475037923004582"],"URL":"https:\/\/doi.org\/10.1016\/j.rpth.2023.102201","relation":{},"ISSN":["2475-0379"],"issn-type":[{"type":"print","value":"2475-0379"}],"subject":[],"published":{"date-parts":[[2023,10]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Patient-relevant health outcomes for von Willebrand disease, platelet function disorders, and rare bleeding disorders: a Delphi study","name":"articletitle","label":"Article Title"},{"value":"Research and Practice in Thrombosis and Haemostasis","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.rpth.2023.102201","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2023 The Authors. Published by Elsevier Inc. on behalf of International Society on Thrombosis and Haemostasis.","name":"copyright","label":"Copyright"}],"article-number":"102201"}}