ATHN 9: Severe VWD Natural History Study

Completed

Conditions studied: Von Willebrand Diseases

In brief

ATHN 9 is a natural history study to assess the safety of various Von Willebrand Factor (VWF) regimens for different indications (on-demand, surgery and prophylaxis) in adult and pediatric participants with clinically severe congenital VWD.

Key facts

Study ID

NCT03853486

Run by

American Thrombosis and Hemostasis Network

People needed

108

Starts

2019-06-18

Expected to finish

2026-06-26

Last updated by the study team

2026-07-13

Who can join

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

You may qualify if…

• Participants with severe Von Willebrand Disease with Type 3 VWD or VWF:RCo, VWF:GPlbM or VWF:Ag ≤30% of pooled normal control plasma on more than one occasion;
• Participants with clinically severe VWD as defined by VWF:RCo, VWF:GPlbM or VWF:Ag ≤40% of normal with severe bleeding phenotype defined as requiring recurrent use of factor concentrates; and
• Co-enrollment in the ATHNdataset.

You may not qualify if…

• Diagnosis of platelet-type VWD;
• Diagnosis of acquired VWD (clinical diagnosis based on association with hypothyroidism, lymphoproliferative and myeloproliferative disorders, malignancies and cardiovascular disease, typically aortic stenosis or LVAD).

Where it is running

• Center for Inherited Blood Disorders — Orange, 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
• University of Florida Hemophilia Treatment Center — Gainesville, Florida, United States
• Children's Healthcare of Atlanta/Emory — Atlanta, Georgia, United States
• Bleeding and Clotting Disorders Institute — Peoria, Illinois, United States
• Indiana Hemophilia and Thrombosis Center (IHTC) — Indianapolis, Indiana, United States
• Louisiana Center for Bleeding and Clotting Disorders — New Orleans, Louisiana, United States
• University of Michigan Hemophilia and Coagulation Disorders — Ann Arbor, Michigan, United States
• Children's Hospital of Michigan Hemostasis and Thrombosis Center — Detroit, Michigan, United States
• Michigan State University Center for Bleeding and Clotting Disorders — East Lansing, Michigan, United States
• Mayo Comprehensive Hemophilia Center — Rochester, Minnesota, United States
• Washington University Center for Treatment of Bleeding and Blood Clotting Disorders — St Louis, Missouri, United States
• Nationwide Children's Hospital Columbus — Columbus, Ohio, United States
• Oregon Health — Portland, Oregon, United States
• Pennsylvania Comprehensive Hemophilia and Thrombophilia Program / Hospital of the University of Pennsylvania — Philadelphia, Pennsylvania, United States
• Hemophilia Center of Western Pennsylvania — Pittsburgh, Pennsylvania, United States
• Rhode Island Hemostasis & Thrombosis Center — Providence, Rhode Island, United States
• University of Tennessee, University Clinical Health (Memphis) — Memphis, Tennessee, United States
• Vanderbilt University Medical Center — Nashville, Tennessee, United States
• Hemophilia Outreach Center — Green Bay, Wisconsin, United States
• Versiti - Blood Center of Wisconsin — Milwaukee, Wisconsin, United States

Full record on ClinicalTrials.gov

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