Clinical trialNCT03818529CompletedObservational

ATHN 8: Previously Untreated Patients (PUPs) Matter Study

SponsorAmerican Thrombosis and Hemostasis NetworkEnrollment237HaemophiliaHaemophilia A Without InhibitorHaemophilia B Without InhibitorHemophiliaHemophilia AHemophilia A With Inhibitor+2 more conditions

View the registry record on ClinicalTrials.gov

Summary

The lay summary the sponsor registered on ClinicalTrials.gov.

This is a multi-center cohort study of approximately 250 previously untreated patients (PUPs) with congenital moderate to severe hemophilia A or B in a network of up to 50 US Hemophilia Treatment Centers (HTCs). Participants will be followed as they receive their first 50 exposure days (ED) to clotting factor replacement product, both prospectively and retrospectively. The data collected on evolving treatment practices will define the incidence and risk factors for inhibitor development during the high risk period of first 50 ED and improve the outcomes of this vulnerable population.

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Investigators

The overall officials registered on this study. Names that resolve to a findmyKOL profile link to it; the rest are shown as registered.

Courtney Thornburg, MD, MS
University of California San Diego, Rady Children's Hospital San Diego
Principal Investigator
clinicaltrials.gov ↗
Marijke van den Berg, MD, PhD
Versiti Blood Health
Principal Investigator
clinicaltrials.gov ↗
Shannon Carpenter, MD, MS
Children's Mercy Hospital Kansas City
Principal Investigator
clinicaltrials.gov ↗

A profile link is shown only when the registered name resolves to a person record with a confident, namesake-checked match; ambiguous names stay unlinked.

Sites

27 registered facilities, with the per-site recruitment status where the registry publishes one. ClinicalTrials.gov does not publish per-site enrollment counts.

United States

Arizona Hemophilia and Thrombosis Center at Phoenix Children'S Hospital
Phoenix, Arizona, United States
Valley Children'S Hospital
Madera, California, United States
Rady Children'S Hospital San Diego
San Diego, California, United States
Ucsf Pediatric Hemophilia Treatment Center at Mission Bay
San Francisco, California, United States
University of Colorado Denver Hemophilia and Thrombosis Center
Aurora, Colorado, United States
Connecticut Bleeding and Clotting Disorders Center
Farmington, Connecticut, United States
Children'S National Medical Center
Washington D.C., District of Columbia, United States
Johns Hopkins All Children'S Hospital
St. Petersburg, Florida, United States
Children'S Healthcare of Atlanta/emory
Atlanta, Georgia, United States
Augusta University Hemophilia Treatment Center
Augusta, Georgia, United States
Rush University Medical Center
Chicago, Illinois, United States
Indiana Hemophilia and Thrombosis Center (ihtc)
Indianapolis, Indiana, United States
Kansas City Regional Hemophilia Center
Kansas City, Kansas, United States
Maine Hemophilia and Thrombosis Center
Scarborough, Maine, United States
Boston Hemophilia Center at Children'S Hospital of Boston
Boston, Massachusetts, United States
University of Michigan Hemophilia and Coagulation Disorders
Ann Arbor, Michigan, United States
Mayo Comprehensive Hemophilia Center
Rochester, Minnesota, United States
Cincinnati Children'S Hospital Medical Center, Hemophilia & Thrombosis Center
Cincinnati, Ohio, United States
Uhhs Cleveland
Cleveland, Ohio, United States
Northwest Ohio Hemophilia Treatment Center at the Toledo Hospital
Toledo, Ohio, United States
Oklahoma Center for Bleeding and Clotting Disorders
Oklahoma City, Oklahoma, United States
Oregon Health and Science University
Portland, Oregon, United States
St Jude Children'S Research Hospital
Memphis, Tennessee, United States
Vanderbilt University Medical Center
Nashville, Tennessee, United States
Utah Center for Bleeding & Clotting Disorders at Primary Children'S Hospital
Salt Lake City, Utah, United States
Hemophilia Outreach Center
Green Bay, Wisconsin, United States
Blood Center of Wisconsin
Milwaukee, Wisconsin, United States

Site investigator names are published by ClinicalTrials.gov only while a study recruits, so completed studies list sites without them.

Drugs studied

No drug or biological interventions are in our data for this study. It may test a procedure, device or behavioral intervention, or the intervention list isn't in our current snapshot. See the registry record ↗. Why? →

Registration & key dates

Registry attributes as recorded on the ClinicalTrials.gov study record.

Start: 3 Oct 2018
Primary completion: 26 Jan 2022
Completion: 31 Dec 2022
Last update posted: 1 Feb 2023
Registered enrollment: 237
Registry id: NCT03818529

clinicaltrials.gov ↗

Source: ClinicalTrials.gov, via the CTTI AACT database, data as of 24 Aug 2026. Registry facts are shown as registered by the study sponsor; findmyKOL does not interpret them.