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Massive european study tracks hemophilia in kids to unlock better care

NCT ID NCT02979119

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

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
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
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 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.

Study facts

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

Participants

About 4,000 people

The number the study aims to enrol. It can still change while the study runs.

Start date

Jun 2014

Expected to finish

Dec 2039

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

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

Who is studied

Children with mild ( FVIII/IX 6 to 25%), moderate (FVIII/IX 1 to 5%) or severe (FVIII/IX \<1%) haemophilia A or B, born from January 1st 2000 until January 1st 2030 who have been or are to be treated in one of the participating centres

Ages

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

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

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: * Diagnosed with Haemophilia A or B * Factor VIII/ IX activity of \<1 to 25% * Complete records of Factor treatment and bleeds * Treated in one of the participating centres Exclusion Criteria: * Patients referred because of an inhibitor\* * Informed consent not obtained

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Get notified about this study

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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

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The study's own enquiry address

    This study publishes an address for enquiries. See it below .

  2. The places running it

    34 sites in 19 countries. The list below names each one and where it is.

  3. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  4. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

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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