Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for ultra-rare inherited bleeding disorders
Nugent D, Acharya S, Baumann K, Bedrosian C, Bialas R, Brown K, Corzo D, Haidar A, Hayward C, Marks P, Menegatti M, Miller M, Nammacher K, Palla R, Peltier S, Pruthi R, Recht M, Sørensen B, Tarantino M, Wolberg A, Shapiro A. Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for ultra-rare inherited bleeding disorders. Expert Review Of Hematology 2023, 16: 55-70. PMID: 36920862, PMCID: PMC10020868, DOI: 10.1080/17474086.2023.2175661.Peer-Reviewed Original ResearchConceptsInherited bleeding disorderBleeding disordersNational Hemophilia FoundationManagement of invasive proceduresDecreased quality-of-lifeCommunity-identified prioritiesHealth care professionalsMultidisciplinary expert working groupPriorities of peopleLife-threatening bleedingHemostasis NetworkQuality-of-lifeCare professionalsExpert Working GroupPsychosocial distressWorking GroupData collectionDelayed DiagnosisInvasive proceduresAmerican ThrombosisEvidence foundationExpansion of expertiseOptimal diagnosisCommunity consultationSuboptimal management
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