ATHN 7: Hemophilia Natural History Study

Completed

Conditions studied: Hemophilia A With Inhibitor, Haemophilia A Without Inhibitor, Hemophilia B With Inhibitor, Haemophilia B Without Inhibitor

In brief

This is a real-world study of the safety of the treatments used for people with hemophilia. The study will follow people with hemophilia A or B from across the country for about 4 years as they receive treatment. The hemophilia treatment center (HTC) physician and participant will decide on the FDA-approved treatment to be used which may include non-factor products, bypassing agents, or clotting factor replacement products. The goal of this research is to study the use of hemophilia treatment products and their outcomes.

Key facts

Study ID

NCT03619863

Run by

American Thrombosis and Hemostasis Network

People needed

395

Starts

2018-10-24

Expected to finish

2024-03-31

Last updated by the study team

2025-02-12

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• Congenital hemophilia A or B of any severity with or without inhibitors receiving a current therapy, a non-factor product, or for whom use of a non-factor product is a possibility;
• Able to give informed consent (by patient or parent/authorized guardian); and
• Co-enrollment in the ATHNdataset.

You may not qualify if…

• Presence of any known bleeding disorder other than congenital hemophilia A or B;
• Presence of concurrent hemophilia and a second hemostatic defect (low Von Willebrand Factor (VWF) without Von Willebrand disease (VWD) diagnosis is not excluded); and
• Unable or unwilling to comply with the study protocol.

Where it is running

• Arizona Hemophilia and Thrombosis Center at Phoenix Children's Hospital — Phoenix, Arizona, United States
• Orthopaedic Institute for Children HTC — Los Angeles, California, United States
• Orthopedic Institute for Children Hemophilia Program — Los Angeles, California, United States
• Rady Children's Hospital San Diego — San Diego, California, United States
• Hemophilia and Thrombosis Center/ University of Colorado Anschutz Medical Campus — Aurora, Colorado, United States
• University of Florida Hemophilia Treatment Center — Gainesville, Florida, United States
• Comprehensive Bleeding Disorders Center at Emory University and Children's Healthcare of Atlanta — Atlanta, Georgia, United States
• Rush University Medical Center — Chicago, Illinois, United States
• Indiana Hemophilia and Thrombosis Center (IHTC) — Indianapolis, Indiana, United States
• Louisiana Center for Bleeding and Clotting Disorders, Tulane University — New Orleans, Louisiana, United States
• Louisiana Center for Bleeding and Clotting Disorders — New Orleans, Louisiana, United States
• Maine Hemophilia and Thrombosis Center — Scarborough, Maine, United States
• Massachusetts General Hospital Comprehensive Hemophilia and Thrombosis Treatment Center — Boston, Massachusetts, United States
• Michigan State University Center for Bleeding and Clotting Disorders — East Lansing, Michigan, United States
• Children's Mercy Hospital - Kansas City — Kansas City, Missouri, United States
• The John Bouhasin Center for Children with Bleeding Disorders — St Louis, Missouri, United States
• Hemostasis and Thrombosis Center of Nevada — Las Vegas, Nevada, United States
• Hemostasis and Thrombosis Center of Nevada — Reno, Nevada, United States
• Newark Beth Israel Medical Center — Newark, New Jersey, United States
• Weill Cornell Medicine — New York, New York, United States
• Wake Forest University Health Science — Winston-Salem, North Carolina, United States
• Northwest Ohio Hemophilia Treatment Center at the Toledo Hospital — Toledo, Ohio, United States
• The Hemophilia Center at Oregon Health & Science University — Portland, Oregon, United States
• Children's Hospital of Philadelphia (CHOP) — Philadelphia, Pennsylvania, United States
• Penn Comprehensive Hemophilia and Thrombophilia Program/Hospital of the University of Pennsylvania — Philadelphia, Pennsylvania, United States

Full record on ClinicalTrials.gov

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