2023
Walking the Walk: Inclusion of Lived Experience Experts in the Design of the National Hemophilia Foundation's National Research Blueprint for Those Living with Inherited Bleeding Disorders
Santaella M, Carlson L, DiMichele D, Norris K, Valadez S, Valentino L, Vazquez E, Witkop M, Recht M. Walking the Walk: Inclusion of Lived Experience Experts in the Design of the National Hemophilia Foundation's National Research Blueprint for Those Living with Inherited Bleeding Disorders. Blood 2023, 142: 7216. DOI: 10.1182/blood-2023-186109.Peer-Reviewed Original ResearchHealth-care providersProfessional health-care providersWG membersResearch team membersResearch NetworkWorking GroupProvision of medical careNational Hemophilia FoundationResearch blueprintHealth equityParticipation of peopleExperience expertsInherited bleeding disorderMedical careCommunity-engagedDemographic informationResearch prioritizationCommunity engagementInherited blood disorderTeam membersBleeding disordersProvidersResearch culture
2022
Building the blueprint: Formulating a community‐generated national plan for future research in inherited bleeding disorders
Valentino L, Witkop M, Santaella M, DiMichele D, Recht M. Building the blueprint: Formulating a community‐generated national plan for future research in inherited bleeding disorders. Haemophilia 2022, 28: 760-768. PMID: 35700441, PMCID: PMC9546016, DOI: 10.1111/hae.14588.Peer-Reviewed Original ResearchConceptsNational Hemophilia FoundationHealth equitySummit discussionsExpert multidisciplinary teamAmerican ThrombosisCommunity prioritiesInherited bleeding disorderMultidisciplinary teamCommunity consultationBleeding disordersPWIBDsUnited StatesHemostasis NetworkChildhood killerResearch blueprintResearch questionsNational planWorking GroupDisease complicationsIndividual disordersDisorder researchDeveloping countriesCommunityNationalDisorders
2021
National Hemophilia Foundation Convenes Diverse Community Voices to Define an Actionable National Research Blueprint for Inherited Bleeding Disorders
Witkop M, Recht M, DiMichele D, Mills K, Valentino L, Santaella M. National Hemophilia Foundation Convenes Diverse Community Voices to Define an Actionable National Research Blueprint for Inherited Bleeding Disorders. Blood 2021, 138: 4952. DOI: 10.1182/blood-2021-149518.Peer-Reviewed Original ResearchNational Hemophilia FoundationSubject matter expertsAllied healthcare providersAllied health professionalsOregon Health & Science UniversityWorking GroupResearch prioritiesResearch blueprintInterdisciplinary working groupHealth professionalsHealthcare providersRegular engagementUnderserved populationsInherited bleeding disorderCare paradigmFocus groupsListening sessionsMatter expertsAmerican ThrombosisResearch SummitProfessional surveyCommunity voicesCareParticipant groupsFeasibility criteria
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