Hemophilia Natural History Study (ATHN 7): Safety of Current Therapies for People with Hemophilia A or B
Buckner T, Carpenter S, Daoud N, Hirsh N, McLean T, O'Neill C, Raffini L, Zia A, Recht M. Hemophilia Natural History Study (ATHN 7): Safety of Current Therapies for People with Hemophilia A or B. Blood 2021, 138: 2105. DOI: 10.1182/blood-2021-146726.Peer-Reviewed Original ResearchAmerican ThrombosisHemostasis NetworkAdvisory CommitteeMedian age of participantsOregon Health & Science UniversityStudy populationNatural history studiesEntity's Board of DirectorsRecombinant factor concentratesAge of participantsDiagnosis of participantsMedical record reviewProspective cohort studyAdverse eventsThrombosis Research SocietyReport adverse eventsHemophilia AEighty-five percentLongitudinal natural history studyRecord reviewSigned informed consentRisk of delayed bleedingTime of enrollmentFactor concentrationsWhite participantsEptacog Beta Efficacy in Children and Adolescents with Hemophilia A or B and Inhibitors: Subset Analysis Suggests Improved Caregiver Capacity to Assess Bleeding Episode Resolution with Subject Age
Young G, Pipe S, Hermans C, Carcao M, Castaman G, Davis J, Ducore J, Dunn A, Escobar M, Journeycake J, Khan O, Mahlangu J, Meeks S, Mitha I, Négrier C, Nowak-Göttl U, Recht M, Chrisentery-Singleton T, Stasyshyn O, Vilchevska K, Martinez L, Wang M, Windyga J, Alexander W, Al-Sabbagh A, Bonzo D, Macie C, Mitchell I, Wilkinson T, Shapiro A. Eptacog Beta Efficacy in Children and Adolescents with Hemophilia A or B and Inhibitors: Subset Analysis Suggests Improved Caregiver Capacity to Assess Bleeding Episode Resolution with Subject Age. Blood 2021, 138: 3195. DOI: 10.1182/blood-2021-147434.Peer-Reviewed Original ResearchInitial dosing regimensEntity's Board of DirectorsEptacog betaBleeding episodesPhase 3 trialCSL BehringPediatric age subgroupsConfidence intervalsTreatment successHemophilia AYears subgroupIncreasing subject ageAge subgroupsSubject ageBeta infusionAdvisory CommitteeResearch fundingOregon Health & Science UniversitySuccess proportionTreatment of bleeding episodesControl of bleeding episodesModerate bleeding episodesTreat bleeding episodesNational Hemophilia FoundationOpen-label trialNational 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 UniversityConsultationNational 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 criteriaReal-World Effectiveness of Damoctocog Alfa Pegol in the Subgroup of Adolescent Hemophilia A Patients Aged 12-18 Years in the ATHNdataset
Chandler M, Recht M, He C, Moulton T, Charafi L. Real-World Effectiveness of Damoctocog Alfa Pegol in the Subgroup of Adolescent Hemophilia A Patients Aged 12-18 Years in the ATHNdataset. Blood 2021, 138: 4241. DOI: 10.1182/blood-2021-152345.Peer-Reviewed Original ResearchDamoctocog alfa pegolHemophilia treatment centersAdolescent patientsBleeding rateTreated twice-weeklyHistory of inhibitorsYear of therapyAmerican ThrombosisAge of patientsMonths of treatmentSevere hemophilia ASubgroup of patientsHemophilia A patientsProportion of patientsBaseline demographic dataPatient chart reviewReal-world studyHemostasis NetworkData cutoffA patientsBleeding eventsWeekly dosesHemophilia AChart reviewOregon Health & Science University
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