2024
Hereditary antithrombin deficiency pilot project registry from the American Thrombosis and Hemostasis Network
DeSancho M, Suvar E, Roberts J, Tarantino M, Schwartz J, Callis J, Recht M. Hereditary antithrombin deficiency pilot project registry from the American Thrombosis and Hemostasis Network. Journal Of Thrombosis And Haemostasis 2024, 22: 3183-3190. PMID: 39151704, DOI: 10.1016/j.jtha.2024.07.026.Peer-Reviewed Original ResearchConceptsHereditary antithrombin deficiencyLow-molecular-weight heparinVenous thromboembolismOral anticoagulantsAT concentrateAdverse eventsIncreased risk of venous thromboembolismRisk factorsRisk of venous thromboembolismDirect oral anticoagulantsAmerican ThrombosisSeventy-nine patientsDeep vein thrombosisHemostasis NetworkRecurrent thrombosisConcentrate administrationPulmonary embolismAntithrombin deficiencyThrombotic eventsVein thrombosisProspective studyPredominant manifestationArterial thrombosisGlobal RegistryIncreased risk
2023
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
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
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 participantsReal-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
2020
Hemophilia Natural History Study (ATHN 7): Baseline Characteristics, Adverse Events, and Self-Reported Health Status of Individuals with Hemophilia a and B
Buckner T, Carpenter S, Croteau S, Cuker A, Daoud N, Kempton C, Malec L, McLean T, Raffini L, Staber J, Wang M, Watson C, Zia A, Recht M. Hemophilia Natural History Study (ATHN 7): Baseline Characteristics, Adverse Events, and Self-Reported Health Status of Individuals with Hemophilia a and B. Blood 2020, 136: 2-3. DOI: 10.1182/blood-2020-137696.Peer-Reviewed Original ResearchEuropean Haemophilia Safety SurveillanceEntity's Board of DirectorsHemophilia treatment centersAdverse eventsHemophilia ACSL BehringHemophilia therapyAmerican ThrombosisCohort studySkin reactionsNatural history cohort studyCongenital hemophilia ARisk of bleedingHemostasis NetworkTreated with clotting factorMinor skin reactionsLocal institutional review boardProspective cohort studyUnrelated to treatmentBaseline medical historyAmerican Academy of PediatricsCohort of subjectsNational Hemophilia FoundationNatural history studiesMedical record review
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