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Real-World study tracks bleeding and daily life in rare bleeding disorder

NCT ID NCT06883240

First seen Nov 01, 2025 · Last updated Jun 20, 2026 · Updated 35 times

Summary

This study observes 44 people with type 3 von Willebrand disease, a rare bleeding disorder, who are already on standard preventive treatment. Researchers will track how often bleeding episodes occur and how the condition affects quality of life over at least 24 weeks. No new drug is being tested; the goal is to gather real-world information on current care.

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This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Contacts and locations

Locations

  • AOU Careggi

    Florence, Tuscany, 50134, Italy

  • Charlotte Maxeke Johannesburg Academic Hospital

    Johannesburg, 2193, South Africa

  • Erasmus MC

    Rotterdam, 3015 GD, Netherlands

  • Gerinnungszentrum Rhein-Ruhr;Gerinnungsambulanz

    Duisburg, 47051, Germany

  • Great Ormond Street Hospital

    London, WC1N 3JH, United Kingdom

  • Groupe Hospitalier Necker Enfants Malades

    Paris, 75015, France

  • Hopital Claude Huriez - CHU Lille

    Lille, 59037, France

  • Hospital Universitario la Paz

    Madrid, 28046, Spain

  • Hospital Universtiario Virgen del Rocio

    Seville, 41013, Spain

  • Hämophiliezentrum Med. Klinik III/Institut für Transfusionsmedizin

    Frankfurt/M., 60590, Germany

  • IPS SURA Industriales Medellín

    Medellín, Colombia

  • IRCCS Ca' Granda Ospedale Maggiore Policlinico

    Milan, Lombardy, 20122, Italy

  • Instytut Hematologii i Transfuzjologii

    Warsaw, 02-776, Poland

  • Kurume University Hospital

    Fukuoka, 830-0011, Japan

  • Manchester Royal Infirmary

    Manchester, M13 9WL, United Kingdom

  • McGill University Health Center

    Montreal, Quebec, H4A 3J1, Canada

  • Sahlgrenska Universitetssjukhuset

    Gothenburg, S-413 45, Sweden

  • St Thomas' Hospital

    London, SE1 7EH, United Kingdom

  • The Hospital for Sick Children

    Toronto, Ontario, M5G 1X8, Canada

  • Tokyo Medical University Hospital

    Tokyo, 160-0023, Japan

  • UC Davis

    Sacramento, California, 95817, United States

  • UZ Leuven Gasthuisberg

    Leuven, 3000, Belgium

  • Universita' Degli Studi La Sapienza-Ist.Di Ematologia

    Rome, Lazio, 00161, Italy

  • University of Florida

    Gainesville, Florida, 32610, United States

  • University of Minnesota Medical Center

    Minneapolis, Minnesota, 55455, United States

  • Universitätsklinikum Bonn

    Bonn, 53127, Germany

  • Washington University School of Medicine

    St Louis, Missouri, 63110, United States

What this could mean

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

What this could lead to

If successful, this study could provide real-world data on how well current standard treatments control bleeding and affect daily life in type 3 VWD.

What could go wrong

This is an observational study, not a trial of a new treatment. It only collects existing data, so it cannot prove whether a new approach works or is safe.

Conditions

The condition(s) this trial relates to.

von Willebrand disease 3

As listed by the trial registrant

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