{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,7]],"date-time":"2026-08-07T16:51:51Z","timestamp":1786121511291,"version":"build-2736575974"},"reference-count":75,"publisher":"Informa UK Limited","issue":"sup1","license":[{"start":{"date-parts":[[2026,7,31]],"date-time":"2026-07-31T00:00:00Z","timestamp":1785456000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"},{"start":{"date-parts":[[2026,7,31]],"date-time":"2026-07-31T00:00:00Z","timestamp":1785456000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/doi.org\/10.1080\/policies-text-data-mining"}],"funder":[{"name":"National Bleeding Disorders Foundation"}],"content-domain":{"domain":["www.tandfonline.com"],"crossmark-restriction":true},"short-container-title":["Expert Review of Hematology"],"published-print":{"date-parts":[[2026,7,31]]},"DOI":"10.1080\/17474086.2026.2688871","type":"journal-article","created":{"date-parts":[[2026,8,7]],"date-time":"2026-08-07T04:59:07Z","timestamp":1786078747000},"page":"7-22","update-policy":"https:\/\/doi.org\/10.1080\/tandf_crossmark_01","source":"Crossref","is-referenced-by-count":3,"title":["Bleeding Disorders Research Collaborative: an opportunity for impact"],"prefix":"10.1080","volume":"19","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-2029-677X","authenticated-orcid":false,"given":"Maria E.","family":"Santaella","sequence":"first","affiliation":[{"name":"National Bleeding Disorders Foundation","place":["New York, USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0002-3485-8470","authenticated-orcid":false,"given":"Sammie","family":"Valadez","sequence":"additional","affiliation":[{"name":"Bleeding Disorders Alliance of Illinois","place":["Peru, USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Esmeralda","family":"V\u00e1zquez","sequence":"additional","affiliation":[{"name":"Lived Experience Expert","place":["Chicago, USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1676-5799","authenticated-orcid":false,"given":"Halli","family":"Benasutti","sequence":"additional","affiliation":[{"name":"National Bleeding Disorders Foundation","place":["New York, USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0007-3148-7324","authenticated-orcid":false,"given":"Samantha A.","family":"Carlson","sequence":"additional","affiliation":[{"name":"National Bleeding Disorders Foundation","place":["New York, USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6208-4682","authenticated-orcid":false,"given":"Donna","family":"DiMichele","sequence":"additional","affiliation":[{"name":"Donna DiMichele Consulting, LLC","place":["Washington, USA"]},{"name":"Weill Cornell Medical College","place":["New York, USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4782-2779","authenticated-orcid":false,"given":"Keri L.","family":"Norris","sequence":"additional","affiliation":[{"name":"National Bleeding Disorders Foundation","place":["New York, USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4286-271X","authenticated-orcid":false,"given":"Fiona","family":"Robinson","sequence":"additional","affiliation":[{"name":"Communications Fiona Robinson, PhD","place":["Montr\u00e9al, Canada"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7927-6418","authenticated-orcid":false,"given":"Leonard A.","family":"Valentino","sequence":"additional","affiliation":[{"name":"National Bleeding Disorders Foundation","place":["New York, USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0758-286X","authenticated-orcid":false,"given":"Michelle L.","family":"Witkop","sequence":"additional","affiliation":[{"name":"Consultant for Inherited Bleeding Disorders","place":["Traverse City, USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2805-1016","authenticated-orcid":false,"given":"Michael","family":"Recht","sequence":"additional","affiliation":[{"name":"National Bleeding Disorders Foundation","place":["New York, USA"]},{"name":"Yale School of Medicine","place":["New Haven, USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"301","published-online":{"date-parts":[[2026,8,6]]},"reference":[{"key":"e_1_3_7_3_1","doi-asserted-by":"publisher","DOI":"10.1080\/17474086.2023.2175660"},{"key":"e_1_3_7_4_1","doi-asserted-by":"publisher","DOI":"10.1080\/17474086.2023.2183836"},{"key":"e_1_3_7_5_1","doi-asserted-by":"publisher","DOI":"10.1080\/17474086.2023.2175661"},{"key":"e_1_3_7_6_1","doi-asserted-by":"publisher","DOI":"10.1080\/17474086.2023.2181781"},{"key":"e_1_3_7_7_1","doi-asserted-by":"publisher","DOI":"10.1080\/17474086.2023.2171983"},{"key":"e_1_3_7_8_1","doi-asserted-by":"publisher","DOI":"10.1080\/17474086.2023.2171981"},{"key":"e_1_3_7_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14588"},{"key":"e_1_3_7_10_1","doi-asserted-by":"publisher","DOI":"10.1080\/17474086.2023.2181782"},{"key":"e_1_3_7_11_1","doi-asserted-by":"publisher","DOI":"10.1080\/17474086.2023.2178410"},{"key":"e_1_3_7_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.bvth.2025.100099"},{"key":"e_1_3_7_13_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.13862"},{"key":"e_1_3_7_14_1","doi-asserted-by":"publisher","DOI":"10.2147\/JBM.S325031"},{"key":"e_1_3_7_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jtha.2023.12.027"},{"key":"e_1_3_7_16_1","doi-asserted-by":"publisher","DOI":"10.1182\/bloodadvances.2020003265"},{"key":"e_1_3_7_17_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14956"},{"key":"e_1_3_7_18_1","doi-asserted-by":"publisher","DOI":"10.1016\/S2352-3026(22)00209-5"},{"key":"e_1_3_7_19_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.thromres.2019.07.014"},{"key":"e_1_3_7_20_1","unstructured":"Clinical Oncology Group. About us. [cited 2025 Feb 5]. Available from: https:\/\/childrensoncologygroup.org\/about"},{"key":"e_1_3_7_21_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.mayocp.2023.02.005"},{"key":"e_1_3_7_22_1","doi-asserted-by":"publisher","DOI":"10.1258\/jrsm.2011.110180"},{"key":"e_1_3_7_23_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1752-8062.2011.00383.x"},{"key":"e_1_3_7_24_1","doi-asserted-by":"publisher","DOI":"10.1080\/17474086.2026.2688873"},{"key":"e_1_3_7_25_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.amepre.2010.11.011"},{"key":"e_1_3_7_26_1","doi-asserted-by":"publisher","DOI":"10.1111\/cts.13547"},{"key":"e_1_3_7_27_1","doi-asserted-by":"publisher","DOI":"10.1377\/hlthaff.2018.05067"},{"key":"e_1_3_7_28_1","unstructured":"U.S. Food & Drug Administration Center for Drug Evaluation and Research. Advancing the development of therapeutics through rare disease patient community engagement: virtual public meeting. 2023 [cited 2024 Aug 7]. Available from: www.fda.gov\/media\/179199\/download?attachment"},{"key":"e_1_3_7_29_1","doi-asserted-by":"publisher","DOI":"10.2105\/AJPH.2009.184036"},{"key":"e_1_3_7_30_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-018-0936-x"},{"key":"e_1_3_7_31_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.38413"},{"key":"e_1_3_7_32_1","unstructured":"Patient-Centered Outcomes Research Institute. The patient-centered outcomes research Institute strategic plan: generating evidence to achieve more efficient effective and equitable health care and improve health for all. [cited 2024 Aug 7]. Available from: https:\/\/www.pcori.org\/about\/about-pcori\/pcori-strategic-plan"},{"key":"e_1_3_7_33_1","unstructured":"National Institute for Health and Care Research. Briefing notes for researchers - public involvement in NHS health and social care research. [cited 2024 Aug 7]. Available from: https:\/\/www.nihr.ac.uk\/documents\/briefing-notes-for-researchers-public-involvement-in-nhs-health-and-social-care-research\/27371"},{"key":"e_1_3_7_34_1","unstructured":"National Institutes of Health. Community-based participatory research Program(CBPR). [cited 2024 Aug 7]. Available from: https:\/\/www.nimhd.nih.gov\/programs\/extramural\/community-based-participatory.html"},{"key":"e_1_3_7_35_1","unstructured":"National Institutes of Health Community Engagement Alliance. Who we are. Available from: https:\/\/ceal.nih.gov\/who-we-are"},{"key":"e_1_3_7_36_1","unstructured":"European Union. Regulation (EU) No 536\/2014 of the European Parliament and of the Council of 16 April 2014 on clinical trials on medicinal products for human use and repealingDirective 2001\/20\/EC text with EEA relevance. 2014 [cited 2024 Nov 7]. Available from: https:\/\/eur-lex.europa.eu\/legal-content\/EN\/TXT\/?uri=CELEX%3A32014R0536"},{"key":"e_1_3_7_37_1","unstructured":"National Center for Advancing Translational Sciences. Application information for PAR-24\u2013272: clinical and Translational Science awards (CTSA) Program (UM1 clinical trial optional). [cited 2024 Nov 7]. Available from: https:\/\/ncats.nih.gov\/research\/research-activities\/ctsa\/applicant-information\/par-24-272-faq"},{"key":"e_1_3_7_38_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.13881"},{"key":"e_1_3_7_39_1","unstructured":"SSC Subcommittee on Von Willebrand Factor. Consensus Expert panel opinion to develop a criteria definition of Severe Von Willebrand disease. [cited 2024 Aug 22]. Available from: https:\/\/cdn.ymaws.com\/www.isth.org\/resource\/resmgr\/ssc\/ssc_myisth\/SSC_Subcommittee_Project_fin.pdf"},{"key":"e_1_3_7_40_1","doi-asserted-by":"publisher","DOI":"10.1182\/bloodadvances.2020003264"},{"key":"e_1_3_7_41_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14046"},{"key":"e_1_3_7_42_1","unstructured":"Cesta J Morgenthaler C Arapshian A et al. VWD Connect Foundation U.S Severe Von Willebrand disease patient Registry. World federation of hemophilia 2022 world congress. Montr\u00e9al (Canada); 2022 [cited 2024 Nov 7]. Available from: https:\/\/vwdconnect.org\/wp-content\/uploads\/2023\/03\/VWD-Connect-Foundation-U.S.-Severe-VWD-Patient-Registry.pdf"},{"key":"e_1_3_7_43_1","doi-asserted-by":"publisher","DOI":"10.2478\/jhp-2024-0020"},{"key":"e_1_3_7_44_1","doi-asserted-by":"publisher","DOI":"10.1182\/bloodadvances.2024012862"},{"key":"e_1_3_7_45_1","volume-title":"Improving representation in clinical trials and research: building research Equity for women and underrepresented groups","author":"National Academies of Sciences, Engineering, and Medicine","year":"2022","unstructured":"National Academies of Sciences, Engineering, and Medicine.Improving representation in clinical trials and research: building research Equity for women and underrepresented groups. Washington (DC): The National Academies Press; 2022. Available from: https:\/\/www.ncbi.nlm.nih.gov\/pubmed\/36137057"},{"key":"e_1_3_7_46_1","doi-asserted-by":"publisher","DOI":"10.1002\/rth2.12468"},{"key":"e_1_3_7_47_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMp2112233"},{"key":"e_1_3_7_48_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.15101"},{"key":"e_1_3_7_49_1","unstructured":"World Health Organization. Social determinants of health. [cited 2024 Aug 1]. Available from: https:\/\/www.who.int\/health-topics\/social-determinants-of-health#tab=tab_1"},{"key":"e_1_3_7_50_1","doi-asserted-by":"publisher","DOI":"10.1146\/annurev-publhealth-052620-103528"},{"key":"e_1_3_7_51_1","doi-asserted-by":"publisher","DOI":"10.1080\/17474086.2026.2688867"},{"key":"e_1_3_7_52_1","doi-asserted-by":"publisher","DOI":"10.1089\/heq.2024.0146"},{"key":"e_1_3_7_53_1","doi-asserted-by":"publisher","DOI":"10.1080\/17474086.2026.2688870"},{"key":"e_1_3_7_54_1","doi-asserted-by":"publisher","DOI":"10.1080\/17474086.2026.2688869"},{"key":"e_1_3_7_55_1","doi-asserted-by":"publisher","DOI":"10.1080\/17474086.2023.2178412"},{"key":"e_1_3_7_56_1","unstructured":"Ries E. Minimum viable product: a guide. 2009 [cited 2024 Oct 25]. Available from: https:\/\/www.startuplessonslearned.com\/2009\/08\/minimum-viable-product-guide.html"},{"key":"e_1_3_7_57_1","unstructured":"American Society of Hematology. ASH DEI toolkit for clinical trial sponsors: incorporating DEI principles throughout the clinical trial life cycle. [cited 2025 Apr 15]. Available from: https:\/\/www.hematology.org\/-\/media\/hematology\/files\/dei\/ash-dei-toolkit-for-clinical-trial-sponsors.pdf"},{"key":"e_1_3_7_58_1","doi-asserted-by":"publisher","DOI":"10.1080\/0142159X.2022.2118038"},{"key":"e_1_3_7_59_1","unstructured":"American Thrombosis and Hemostasis Network. National Projects. [cited 2024 Aug 12]. Available from: https:\/\/athn.org\/what-we-do\/national-projects\/overview.html"},{"key":"e_1_3_7_60_1","unstructured":"Indiana Hemophilia & Thrombosis Center. Partners in Bleeding Disorders education. [cited 2024 Aug 12]. Available from:https:\/\/www.partnersprn.org\/"},{"key":"e_1_3_7_61_1","unstructured":"National Medical Fellowships. Programs portfolio overview. [cited 2024 Aug 12]. Available from: https:\/\/nmfonline.org\/scholarships-programs\/programs-portfolio-overview\/"},{"key":"e_1_3_7_62_1","unstructured":"National Bleeding Disorders Foundation. What is CVR? [cited 2024 Aug 12]. Available from: https:\/\/www.bleeding.org\/research\/community-voices-in-research\/what-is-cvr"},{"key":"e_1_3_7_63_1","unstructured":"Foundation for Women & girls with Blood Disorders. Educating providers. Changing lives. [cited 2024 Aug 12]. Available from: https:\/\/www.fwgbd.org\/"},{"key":"e_1_3_7_64_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11266-023-00627-2"},{"key":"e_1_3_7_65_1","doi-asserted-by":"publisher","DOI":"10.1177\/1524839918818830"},{"key":"e_1_3_7_66_1","doi-asserted-by":"publisher","DOI":"10.1097\/ANS.0000000000000435"},{"key":"e_1_3_7_67_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2025.6643"},{"key":"e_1_3_7_68_1","unstructured":"U.S. Department of Health and Human Services. Celebrating 100 days of the trump administration. [cited 2025 May 5]. Available from: https:\/\/www.hhs.gov\/hhs-100-days-big-wins-maha\/index.html"},{"key":"e_1_3_7_69_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732318812773"},{"key":"e_1_3_7_70_1","unstructured":"Racism: science and tools for the public health professional. (WA) (DC): APHA Press; 2019. Available from: https:\/\/ajph.aphapublications.org\/doi\/book\/10.2105\/9780875533049"},{"key":"e_1_3_7_71_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41372-021-01241-0"},{"key":"e_1_3_7_72_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.15085"},{"key":"e_1_3_7_73_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.14383"},{"key":"e_1_3_7_74_1","unstructured":"National Hemophilia Program Coordinating Center. Regional Hemophilia networks. [cited 2024 Oct 2]. Available from: https:\/\/nhpcc.org\/regional-hemophilia-networks\/"},{"key":"e_1_3_7_75_1","doi-asserted-by":"publisher","DOI":"10.7326\/M19-1208"},{"key":"e_1_3_7_76_1","doi-asserted-by":"publisher","DOI":"10.1111\/hae.13998"},{"key":"e_1_3_7_77_1","unstructured":"World Federation of Hemophilia. Annual report 2024. 2025 [cited 2026 Mar 11]. Available from: https:\/\/wfh.org\/about-wfh\/#wfh-annual-report-2024\/1\/"}],"container-title":["Expert Review of Hematology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.tandfonline.com\/doi\/pdf\/10.1080\/17474086.2026.2688871","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.tandfonline.com\/doi\/full-xml\/10.1080\/17474086.2026.2688871","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.tandfonline.com\/doi\/pdf\/10.1080\/17474086.2026.2688871","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,8,7]],"date-time":"2026-08-07T04:59:17Z","timestamp":1786078757000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.tandfonline.com\/doi\/full\/10.1080\/17474086.2026.2688871"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,7,31]]},"references-count":75,"journal-issue":{"issue":"sup1","published-print":{"date-parts":[[2026,7,31]]}},"alternative-id":["10.1080\/17474086.2026.2688871"],"URL":"https:\/\/doi.org\/10.1080\/17474086.2026.2688871","relation":{},"ISSN":["1747-4086","1747-4094"],"issn-type":[{"value":"1747-4086","type":"print"},{"value":"1747-4094","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,7,31]]},"assertion":[{"value":"The publishing and review policy for this title is described in its Aims & Scope.","order":1,"name":"peerreview_statement","label":"Peer Review Statement"},{"value":"http:\/\/www.tandfonline.com\/action\/journalInformation?show=aimsScope&journalCode=ierr20","URL":"http:\/\/www.tandfonline.com\/action\/journalInformation?show=aimsScope&journalCode=ierr20","order":2,"name":"aims_and_scope_url","label":"Aim & Scope"},{"value":"2025-09-09","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-06-10","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-08-06","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}