2024
An International, Multidisciplinary Consensus Set of Patient-Centered Outcome Measures for Substance-Related and Addictive Disorders
Black N, Chung S, Tisdale C, Fialho L, Aramrattana A, Assanangkornchai S, Blaszczynski A, Bowden-Jones H, van den Brink W, Brown A, Brown Q, Cottler L, Elsasser M, Ferri M, Florence M, Gueorguieva R, Hampton R, Hudson S, Kelly P, Lintzeris N, Murphy L, Nadkarni A, Neale J, Rosen D, Rumpf H, Rush B, Segal G, Shorter G, Torrens M, Wait C, Young K, Farrell M. An International, Multidisciplinary Consensus Set of Patient-Centered Outcome Measures for Substance-Related and Addictive Disorders. Journal Of Clinical Medicine 2024, 13: 2154. PMID: 38610919, PMCID: PMC11012938, DOI: 10.3390/jcm13072154.Peer-Reviewed Original ResearchInternational Consortium for Health Outcomes MeasurementOutcome measuresEvidence synthesisHealth-related quality of lifeHealth outcome measuresUnited States Institute of MedicineHealth-related qualityInstitute of MedicineModified Delphi processNational outcome measuresMulti-disciplinary working groupConsensus-based recommendationsQuality of lifeTobacco use disorderAddiction treatment servicesEvidence-based proposalSymptom burdenHealthcare settingsMental healthOutcome domainsAddiction expertsDelphi processCase-mixAddictive disordersSubstance-related
2021
National Hemophilia Foundation Enlists Diverse Patient Voices to Inform a National Research Blueprint for Inherited Bleeding Disorders
Santaella M, Witkop M, Mills K, Recht M, DiMichele D, Valentino L. National Hemophilia Foundation Enlists Diverse Patient Voices to Inform a National Research Blueprint for Inherited Bleeding Disorders. Blood 2021, 138: 1904. DOI: 10.1182/blood-2021-147857.Peer-Reviewed Original ResearchNational Hemophilia FoundationResearch prioritiesListening sessionsSubject matter expertsOregon Health & Science UniversityParticipant groupsMulti-disciplinary working groupWorking GroupHealth professionalsPatient vignettesUnderserved populationsInherited bleeding disorderPatient voiceEnlists individualsPatient communityUnmet needsAmerican ThrombosisResearch SummitCommunity supportCommunity surveyCommunity needsCommunity segmentsDiverse populationsScience UniversityConsultation
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