{"database":"biostudies-literature","file_versions":[],"scores":null,"additional":{"submitter":["Valentino LA"],"funding":["National Heart, Lung, and Blood Institute","NHLBI NIH HHS","National Hemophilia Foundation"],"pagination":["760-768"],"full_dataset_link":["https://www.ebi.ac.uk/biostudies/studies/S-EPMC9546016"],"repository":["biostudies-literature"],"omics_type":["Unknown"],"volume":["28(5)"],"pubmed_abstract":["<h4>Introduction</h4>Decades of inherited bleeding disorders (BD) research transformed severe haemophilia from a childhood killer to a disorder managed across a full lifespan for many in economically developed countries. Health equity, a life unimpaired by disease complications, however, remains unimaginable for most people with an inherited BD (PWIBD).<h4>Aim</h4>The National Hemophilia Foundation (NHF) and American Thrombosis and Hemostasis Network (ATHN) undertook the development of a community-driven United States (US) National Blueprint for Inherited Bleeding Disorders Research to transform the experience of all PWIBD and those who care for them.<h4>Methods</h4>Extensive community consultations were conducted to identify the issues most important to PWIBD and those who love and care f"],"journal":["Haemophilia : the official journal of the World Federation of Hemophilia"],"pubmed_title":["Building the blueprint: Formulating a community-generated national plan for future research in inherited bleeding disorders."],"pmcid":["PMC9546016"],"funding_grant_id":["R13HL158209"],"pubmed_authors":["Witkop ML","Recht M","Valentino LA","Santaella ME","DiMichele D"],"additional_accession":[]},"is_claimable":false,"name":"Building the blueprint: Formulating a community-generated national plan for future research in inherited bleeding disorders.","description":"<h4>Introduction</h4>Decades of inherited bleeding disorders (BD) research transformed severe haemophilia from a childhood killer to a disorder managed across a full lifespan for many in economically developed countries. Health equity, a life unimpaired by disease complications, however, remains unimaginable for most people with an inherited BD (PWIBD).<h4>Aim</h4>The National Hemophilia Foundation (NHF) and American Thrombosis and Hemostasis Network (ATHN) undertook the development of a community-driven United States (US) National Blueprint for Inherited Bleeding Disorders Research to transform the experience of all PWIBD and those who care for them.<h4>Methods</h4>Extensive community consultations were conducted to identify the issues most important to PWIBD and those who love and care f","dates":{"release":"2022-01-01T00:00:00Z","publication":"2022 Sep","modification":"2025-04-22T12:08:49.826Z","creation":"2025-04-06T00:12:41.072Z"},"accession":"S-EPMC9546016","cross_references":{"pubmed":["35700441"],"doi":["10.1111/hae.14588"]}}