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Massive european study tracks hemophilia in kids to unlock better care

NCT ID NCT02979119

Recruiting now Knowledge-focused Sponsor: PedNet Haemophilia Research Foundation Source: ClinicalTrials.gov ↗

First seen Jun 26, 2026 · Last updated Jun 26, 2026

Summary

This registry collects health data from 4,000 children with hemophilia A or B across Europe. Researchers track bleeding episodes, joint health, and antibody development to clotting factors. The goal is to understand long-term outcomes and improve treatment for this rare bleeding disorder.

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 registry could provide insights that improve treatment strategies for children with hemophilia.
What could go wrong
This is an observational registry, not a treatment trial. It cannot directly test new therapies or guarantee better outcomes.

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

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Conditions

The condition(s) this trial relates to.

hemophilia A hemophilia B

As listed by the trial registrant

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

FACTOR IX DEFICIENCY FACTOR VIII DEFICIENCY

Contacts and locations

Study contacts

  • Contact

    Email: •••••@•••••

Locations

  • A. Bianchi Bonomi Hemophilia and Thrombosis Centre IRCCS Ca' Granda Ospedale Maggiore Policlinico

    COMPLETED

    Milan, 20122, Italy

  • Azienda Ospedaliero Universitaria Careggi

    RECRUITING

    Florence, Italy

  • Birmingham Children's Hospital NHS Trust - Department of Haematology

    RECRUITING

    Birmingham, United Kingdom

  • Centre de traitement des hémophiles Hôpital Universitaire Purpan

    RECRUITING

    Toulouse, F-31052, France

  • Centro Hospitalar São João, S. Imuno-hemoterapia

    RECRUITING

    Porto, Portugal

  • Charité Campus Virchow Klinikum, Klinik für Pädiatrie m.S. Onkologie und Hämatologie

    RECRUITING

    Berlin, Germany

  • Children's Health Ireland (CHI) at Crumlin

    RECRUITING

    Dublin, Ireland

  • Children's Hospital Helsinki University Hospital

    RECRUITING

    Helsinki, FIN-00029, Finland

  • Department of Haematology Royal Hospital for Sick Children

    RECRUITING

    Glasgow, G 3885, United Kingdom

  • Department of Internal Medicine, Hemophilia Treatment Center, Vivantes Klinikum im Friedrichshain

    RECRUITING

    Berlin, Germany

  • Department of Paediatric Haematology/oncology - University Hospital Motol

    RECRUITING

    Prague, 150 06, Czechia

  • Department of Pediatrics Århus Kommunehospital Skejby Sygehus

    RECRUITING

    Aarhus, DK-8200, Denmark

  • Department of Pediatrics, Clinic of Coag. Disorders Karolinska Hospital

    RECRUITING

    Stockholm, S-17176, Sweden

  • Division of Haematology/Oncology Hospital for Sick Children

    RECRUITING

    Toronto, M5G-1X8, Canada

  • Division of Hematology/Oncology Hôpital St Justine

    RECRUITING

    Montreal, H3T 1C5, Canada

  • Dr. v. Haunersches Kinderspital University of Munich

    RECRUITING

    Munich, D-80337, Germany

  • Gaslini Hospital

    RECRUITING

    Genova, I-16184, Italy

  • Haemophila Center Great Ormond Street Hospital for Children

    COMPLETED

    London, WC1N3JH, United Kingdom

  • Haemophilia Comprehensive Care Centre, Centre for Thrombosis and Haemostasis Children's University Hospital Brno

    RECRUITING

    Brno, 613 00, Czechia

  • Haemophilia-Haemostasis Unit St. Sophia Children's Hospital

    RECRUITING

    Athens, GR-11527, Greece

  • Hospital General Unidad de Hemofilia 1 Sur Hospitales Universitarios Virgen del Rocio

    COMPLETED

    Seville, 41013, Spain

  • Hämophilie Zentrum Rhein Main

    RECRUITING

    Frankfurt, D-60596, Germany

  • Inselspital Bern, University Children's Hospital

    RECRUITING

    Bern, Switzerland

  • Institut für Experimentelle Hämatologie und Transfusionsmedizin Universitätsklinikum Bonn

    RECRUITING

    Bonn, D-53127, Germany

  • Klinik Bremen-Mitte Prof.-Hess-Kinderklinik

    RECRUITING

    Bremen, D 28177, Germany

  • Lund University Hospital

    RECRUITING

    Malmö, S-20502, Sweden

  • Medical University of Vienna - Department of Paediatrics

    RECRUITING

    Vienna, Austria

  • Oslo University Hospital

    NOT_YET_RECRUITING

    Oslo, Norway

  • Royal Hospital for Sick Children

    COMPLETED

    Edinburgh, EH9 1LF, United Kingdom

  • Service Hématologique Centre Regional Traitement d'Hemophilie Bicetre

    RECRUITING

    Le Kremlin-Bicêtre, F-94270, France

  • Service d'Hématologie Pédiatrique Hôpital Universitaire La Timone

    RECRUITING

    Marseille Cedex-05, F-13385, France

  • Service of Pediatric Haematology University Hospital Leuven

    RECRUITING

    Leuven, B-3000, Belgium

  • The National Hemophilia Center Sheba Medical Center, Tel Hashomer

    RECRUITING

    Ramat Gan, 52621, Israel

  • Unidad de Coagulopatias Congenitas Hospital Universitario la Fe

    RECRUITING

    Valencia, 46009, Spain

  • Unidad de Coagulopatías Hospital Universitario La Paz

    RECRUITING

    Madrid, 28046, Spain

  • Unitat Hemofilia Hospital Vall d'Hebron

    RECRUITING

    Barcelona, 08035, Spain

  • University Hospital Frankfurt & Goethe University - Clinical and Molecular Hemostasis, Department of Pediatrics

    RECRUITING

    Frankfurt am Main, Germany

  • Universitäts-Klinik für Kinder- und Jugendheilkunde

    COMPLETED

    Graz, A-8036, Austria

  • Van Creveld Kliniek University Medical Center Utrecht

    RECRUITING

    Utrecht, 3508 GA, Netherlands

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