RecruitingNCT06883240

An Observational Study of Participants With Type 3 Von Willebrand Disease on Prophylactic Standard-of-Care Treatment

A Multicenter Non-Interventional Study Evaluating Bleeds and Health-Related Quality Of Life in Patients With Type 3 Von Willebrand Disease on Prophylactic Standard-of-Care Treatment


Sponsor

Hoffmann-La Roche

Enrollment

40 participants

Start Date

Apr 29, 2025

Study Type

OBSERVATIONAL

Conditions

Summary

This non-interventional study (NIS) is designed to collect information on the effectiveness and safety of treatment received in routine clinical care, as well as measure the health-related quality of life (HRQoL) of participants with Type 3 von Willebrand disease (VWD) receiving prophylactic therapy per local standard of care (SOC) over an observation period of at least 24 weeks.


Eligibility

Min Age: 2 Years

Inclusion Criteria4

  • Confirmed diagnosis of Type 3 von Willebrand disease (VWD), based on medical records
  • Adequate hematologic, hepatic, and renal function
  • Documented and confirmed previous use of SOC prophylactic therapy for VWD (1-3 times weekly, as per prescribed dose) and anticipation to remain on the same regimen during the study
  • For participants of childbearing potential: agreement to remain abstinent or adhere to the contraception requirements

Exclusion Criteria7

  • Inherited or acquired bleeding disorder other than Congenital Type 3 VWD
  • History of gastrointestinal bleeding within 18 months prior to enrollment, or any previous diagnosis of angiodysplasia
  • History of intracranial hemorrhage
  • Previous or current treatment for thromboembolic disease or signs of thromboembolic disease
  • Other conditions (e.g., certain autoimmune diseases) that may increase risk of bleeding or thrombosis
  • History of clinically significant hypersensitivity associated with monoclonal antibody therapies or components of the emicizumab injection
  • Use of systemic immunomodulators (e.g., interferon) at enrollment or planned use during the study, with the exception of anti-retroviral therapy

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Interventions

DRUGVon Willebrand Factor Concentrates

Used according to local labeling or local treatment guidelines.

DRUGVon Willebrand Factor Concentrates and Factor VIII Concentrates

Used according to local labeling or local treatment guidelines.

DRUGFactor VIII Concentrates

Used according to local labeling or local treatment guidelines.

DRUGRecombinant Activated Factor VII

Used according to local labeling or local treatment guidelines.

DRUGActivated Prothrombin Complex Concentrate

Used according to local labeling or local treatment guidelines.


Locations(27)

UC Davis

Sacramento, California, United States

University of Florida

Gainesville, Florida, United States

University of Minnesota Medical Center

Minneapolis, Minnesota, United States

Washington University School of Medicine

St Louis, Missouri, United States

UZ Leuven Gasthuisberg

Leuven, Belgium

The Hospital for Sick Children

Toronto, Ontario, Canada

McGill University Health Center

Montreal, Quebec, Canada

IPS SURA Industriales Medellín

Medellín, Colombia

Hopital Claude Huriez - CHU Lille

Lille, France

Groupe Hospitalier Necker Enfants Malades

Paris, France

Universitätsklinikum Bonn

Bonn, Germany

Gerinnungszentrum Rhein-Ruhr;Gerinnungsambulanz

Duisburg, Germany

Hämophiliezentrum Med. Klinik III/Institut für Transfusionsmedizin

Frankfurt/M., Germany

Universita' Degli Studi La Sapienza-Ist.Di Ematologia

Rome, Lazio, Italy

IRCCS Ca' Granda Ospedale Maggiore Policlinico

Milan, Lombardy, Italy

AOU Careggi

Florence, Tuscany, Italy

Kurume University Hospital

Fukuoka, Japan

Tokyo Medical University Hospital

Tokyo, Japan

Erasmus MC

Rotterdam, Netherlands

Instytut Hematologii i Transfuzjologii

Warsaw, Poland

Charlotte Maxeke Johannesburg Academic Hospital

Johannesburg, South Africa

Hospital Universitario la Paz

Madrid, Spain

Hospital Universtiario Virgen del Rocio

Seville, Spain

Sahlgrenska Universitetssjukhuset

Gothenburg, Sweden

St Thomas' Hospital

London, United Kingdom

Great Ormond Street Hospital

London, United Kingdom

Manchester Royal Infirmary

Manchester, United Kingdom

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