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Tracking Real-World safety of treatments for a rare bleeding disorder

NCT ID NCT03853486

Knowledge-focused Sponsor: American Thrombosis and Hemostasis Network Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed This study
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jul 13, 2026 · Last updated Jul 14, 2026 · Updated 1 time

Summary

This study follows people with severe von Willebrand disease (VWD) to see how well different treatments work and how safe they are in everyday use. Researchers are tracking side effects and how the body responds to therapy given on demand, during surgery, or as regular prevention. The goal is to improve care for both children and adults with this inherited bleeding condition.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

Active substance
Von Willebrand Factor (VWF) regimens
What this could lead to
If successful, this study could provide better understanding of how to safely use VWF treatments for different situations like bleeding episodes or surgery.
What could go wrong
This is an observational study, not a controlled trial, so it cannot prove cause and effect. Results may be limited by the small number of participants.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

108 people

The number who actually took part.

Started

Jun 2019

Finished

Jun 2026

Lead sponsor

A research network

The lead sponsor is a research network or cooperative group.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

This is a natural history study in which it is anticipated that approximately 130 participants will be enrolled. The study will attempt to enroll a target number of at least 30 participants who are receiving VONVENDI but will not mandate the use of VONVENDI.

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: 1. 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; 2. 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 3. Co-enrollment in the ATHNdataset. Exclusion Criteria: 1. Diagnosis of platelet-type VWD; 2. Diagnosis of acquired VWD (clinical diagnosis based on association with hypothyroidism, lymphoproliferative and myeloproliferative disorders, malignancies and cardiovascular disease, typically aortic stenosis or LVAD).

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Conditions

The condition(s) this trial relates to.

hereditary von Willebrand disease von Willebrand disease (hereditary or acquired)

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Von Willebrand diseases

Contacts and locations

Locations

  • Bleeding and Clotting Disorders Institute

    Peoria, Illinois, 61615, United States

  • Center for Inherited Blood Disorders

    Orange, California, 92868, United States

  • Children's Healthcare of Atlanta/Emory

    Atlanta, Georgia, 30322, United States

  • Children's Hospital of Michigan Hemostasis and Thrombosis Center

    Detroit, Michigan, 48201, United States

  • Connecticut Bleeding and Clotting Disorders Center

    Farmington, Connecticut, 06030, United States

  • Hemophilia Center of Western Pennsylvania

    Pittsburgh, Pennsylvania, 15213, United States

  • Hemophilia Outreach Center

    Green Bay, Wisconsin, 54311, United States

  • Indiana Hemophilia and Thrombosis Center (IHTC)

    Indianapolis, Indiana, 46260, United States

  • Louisiana Center for Bleeding and Clotting Disorders

    New Orleans, Louisiana, 70112, United States

  • Mayo Comprehensive Hemophilia Center

    Rochester, Minnesota, 55905, United States

  • Michigan State University Center for Bleeding and Clotting Disorders

    East Lansing, Michigan, 48823, United States

  • Nationwide Children's Hospital Columbus

    Columbus, Ohio, 43205, United States

  • Oregon Health

    Portland, Oregon, 91239, United States

  • Pennsylvania Comprehensive Hemophilia and Thrombophilia Program / Hospital of the University of Pennsylvania

    Philadelphia, Pennsylvania, 19104, United States

  • Rhode Island Hemostasis & Thrombosis Center

    Providence, Rhode Island, 02903, United States

  • University of Colorado Denver Hemophilia and Thrombosis Center

    Aurora, Colorado, 80045, United States

  • University of Florida Hemophilia Treatment Center

    Gainesville, Florida, 32610, United States

  • University of Michigan Hemophilia and Coagulation Disorders

    Ann Arbor, Michigan, 48109, United States

  • University of Tennessee, University Clinical Health (Memphis)

    Memphis, Tennessee, 38119, United States

  • Vanderbilt University Medical Center

    Nashville, Tennessee, 37212, United States

  • Versiti - Blood Center of Wisconsin

    Milwaukee, Wisconsin, 53201, United States

  • Washington University Center for Treatment of Bleeding and Blood Clotting Disorders

    St Louis, Missouri, 63110, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.