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NCT04398628

ATHN Transcends: A Natural History Cohort Study of the Safety, Effectiveness, and Practice of Treatment in People With Non-Neoplastic Hematologic Disorders

Study Summary

In parallel with the growth of ATHN's clinical studies, the number of new therapies for all blood disorders is increasing significantly. Some of the recently FDA-approved therapies for congenital and acquired hematologic conditions have not yet demonstrated long-term safety and effectiveness beyond the pivotal trials that led to their approval. In addition, results from well controlled, pivotal studies often cannot be replicated once a therapy has been approved for general use.2,3,4,5 In 2019 alone, the FDA has issued approvals for 24 new therapies for congenital and acquired hematologic conditions.6 In addition, almost 10,000 new studies for hematologic diseases are currently registered on www.clinicaltrials.gov.7 With this increase in potential new therapies possible, it is imperative that clinicians and clinical researchers in the field of non-neoplastic hematology have a uniform, secure, unbiased, and enduring method to collect long-term safety and efficacy data. As emphasized in a recently published review, accurate, uniform and quality national data collection is critical in clinical research, particularly for longitudinal cohort studies covering a lifetime of biologic risk.8

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Interventions

No interventions listed.

Study Locations

FacilityCityStateCountry
Arizona Hemophilia and Thrombosis Treatment Center at Phoenix Children's HospitalPhoenixArizonaUnited States
Arkansas Center for Bleeding DisordersLittle RockArkansasUnited States
Orthopaedic Institute for Children HTCLos AngelesCaliforniaUnited States
Childrens Hospital Los AngelesLos AngelesCaliforniaUnited States
UCSF Benioff Children's Hospital OaklandOaklandCaliforniaUnited States
University of California at Davis Hemophilia Treatment CenterSacramentoCaliforniaUnited States
Loma Linda Hemoglobinopathy and Inherited Bleeding Disorder ProgramSan BernardinoCaliforniaUnited States
Hemophilia & Thrombosis Treatment Center at UC San Diego HealthSan DiegoCaliforniaUnited States
Rady Children's Hospital San DiegoSan DiegoCaliforniaUnited States
University of California, San Francisco Hemophilia & Thrombosis CenterSan FranciscoCaliforniaUnited States
Connecticut Children's Medical CenterHartfordConnecticutUnited States
Yale Hemophilia Treatment CenterNew HavenConnecticutUnited States
Delaware Hemophilia Treatment CenterWilmingtonDelawareUnited States
Georgetown UniversityWashington D.C.District of ColumbiaUnited States
Children's National Hemophilia CenterWashington D.C.District of ColumbiaUnited States
University of Florida Hemophilia Treatment CenterGainesvilleFloridaUnited States
University of Miami Comprehensive Hemophilia Treatment CenterMiamiFloridaUnited States
Arnold Palmer Hospital for Children - The Haley Center for Children's Cancer and Blood DisordersOrlandoFloridaUnited States
Johns Hopkins All Children's HospitalSt. PetersburgFloridaUnited States
St. Joseph's Hospital Center for Bleeding & Clotting DisordersTampaFloridaUnited States
Comprehensive Bleeding Disorders Center at Emory University and Children's Healthcare of AtlantaAtlantaGeorgiaUnited States
Emory/Children's Health Care of AtlantaAtlantaGeorgiaUnited States
Memorial Health University Medical CenterSavannahGeorgiaUnited States
Rush University Medical CenterChicagoIllinoisUnited States
Bleeding and Clotting Disorders InstitutePeoriaIllinoisUnited States
Indiana Hemophilia and Thrombosis CenterIndianapolisIndianaUnited States
Iowa Hemophilia and Thrombosis CenterIowa CityIowaUnited States
Louisiana Center for Bleeding and Clotting Disorders, Tulane UniversityNew OrleansLouisianaUnited States
Maine Hemophilia and Thrombosis CenterScarboroughMaineUnited States
Johns Hopkins University Hemophilia Treatment CenterBaltimoreMarylandUnited States
Massachusetts General Hospital Comprehensive Hemophilia and Thrombosis Treatment CenterBostonMassachusettsUnited States
Central Michigan Children's Hospital of MichiganDetroitMichiganUnited States
Henry Ford Health System Bleeding and Thrombosis Treatment CenterDetroitMichiganUnited States
Mayo Comprehensive Hemophilia CenterRochesterMinnesotaUnited States
Children's Mercy Hospital - Kansas CityKansas CityMissouriUnited States
The John Bouhasin Center for Children with Bleeding DisordersSt LouisMissouriUnited States
Cure 4 The Kids FoundationLas VegasNevadaUnited States
Hemostasis and Thrombosis Center of NevadaRenoNevadaUnited States
Newark Beth Israel Medical Center - Hemophilia CenterNewarkNew JerseyUnited States
University of New Mexico Ted R. Montoya Hemophilia & Thrombosis ProgramAlbuquerqueNew MexicoUnited States
Western New York BloodCareBuffaloNew YorkUnited States
Northwell Health Hemostasis and Thrombosis Center at Long Island Jewish and Cohen Children's Medical CenterHyde ParkNew YorkUnited States
Weill Cornell Medical College - New York Presbyterian HospitalNew YorkNew YorkUnited States
American Thrombosis and Hemostasis NetworkRochesterNew YorkUnited States
Montefiore Medical CenterThe BronxNew YorkUnited States
Comprehensive Hemophilia Treatment Center, University of North Carolina at Chapel HillChapel HillNorth CarolinaUnited States
St. Jude Affiliate Clinic at Novant Health Hemby Children's HospitalCharlotteNorth CarolinaUnited States
East Carolina University Hemophilia Treatment CenterGreenvilleNorth CarolinaUnited States
Wake Forest University Health SciencesWinston-SalemNorth CarolinaUnited States
Akron Children's Hospital - Showers Center for Cancer & Blood DisordersAkronOhioUnited States
Cincinnati Children's Hospital Medical Center, Hemophilia & Thrombosis CenterCincinnatiOhioUnited States
University of Cincinnati Medical Center Hemophilia Treatment CenterCincinnatiOhioUnited States
University Hospitals Health System ClevelandClevelandOhioUnited States
Nationwide Children's Hospital ColumbusColumbusOhioUnited States
Dayton Children's Hemostasis and Thrombosis CenterDaytonOhioUnited States
Northwest Ohio Hemophilia Treatment Center at the Toledo HospitalToledoOhioUnited States
Children's Hospital of PhiladelphiaPhiladelphiaPennsylvaniaUnited States
Penn Comprehensive Hemophilia and Thrombophilia Program/Hospital of the University of PennsylvaniaPhiladelphiaPennsylvaniaUnited States
Hemophilia Center of Western PennsylvaniaPittsburghPennsylvaniaUnited States
Rhode Island Hospital Hemostasis and Thrombosis CenterProvidenceRhode IslandUnited States
St. Jude Children's Research HospitalMemphisTennesseeUnited States
Vanderbilt University Medical CenterNashvilleTennesseeUnited States
Children's Blood and Cancer Center of Central TexasAustinTexasUnited States
North Texas Hemophilia and Thrombosis Program - Pediatric Program / Center for Cancer & Blood DisordersDallasTexasUnited States
North Texas Comprehensive Hemophilia Treatment CenterDallasTexasUnited States
Gulf States Hemophilia and Thrombophilia CenterHoustonTexasUnited States
Texas Children's Hemophilia & Thrombosis Center/Baylor College of MedicineHoustonTexasUnited States
South Texas Comprehensive Hemophilia and Thrombophilia Treatment CenterSan AntonioTexasUnited States
Washington Center for Bleeding DisordersSeattleWashingtonUnited States
Hemophilia Outreach Center Green BayGreen BayWisconsinUnited States
Comprehensive Center for Bleeding DisordersMilwaukeeWisconsinUnited States

Official Trial Information

View on ClinicalTrials.gov

Data sourced from ClinicalTrials.gov. Last updated: April 14, 2026