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Clinical Trials in Sweden / NCT02979119
Recruiting Observational

The European Paediatric Network for Haemophilia Management ( PedNet Registry)

NCT02979119 · tracked via the Priya Life Science Sweden tracker
Sponsor
PedNet Haemophilia Research Foundation
Phase
Observational
Started
2014-06
Last updated
2025-09-16

Condition(s) studied

Factor VIII DeficiencyFactor IX Deficiency

Study summary

Rationale:

Haemophilia is a rare disease; to improve knowledge international collaboration is needed. Well-defined clinical data will be collected from complete cohorts in order to prevent selection bias.

Objective:

To collect data on bleeding during neonatal period, endogenous (genetic) and exogenous (treatment-related) determinants of inhibitor development and long term outcome.

Eligibility

Sex
ALL
Min age
—
Max age
—
Healthy volunteers
No
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

Primary outcome measure(s)

  • Number of patients with antibody development to exogenous clotting factors — Until patient reaches age of 18
    Allo-antibodies against Factor VIII and IX; Blood test: measurement in Bethesda units (BU), positive according to local standards, for most labs \>0.5 BU

Trial sites (39)

FacilityCityRegionStatus
Universitäts-Klinik für Kinder- und Jugendheilkunde Graz Austria Completed
Medical University of Vienna - Department of Paediatrics Vienna Austria Recruiting
Service of Pediatric Haematology University Hospital Leuven Leuven Belgium Recruiting
Division of Hematology/Oncology Hôpital St Justine Montreal Canada Recruiting
Division of Haematology/Oncology Hospital for Sick Children Toronto Canada Recruiting
Haemophilia Comprehensive Care Centre, Centre for Thrombosis and Haemostasis Children's University Hospital Brno Brno Czechia Recruiting
Department of Paediatric Haematology/oncology - University Hospital Motol Prague Czechia Recruiting
Department of Pediatrics Århus Kommunehospital Skejby Sygehus Aarhus Denmark Recruiting
Children's Hospital Helsinki University Hospital Helsinki Finland Recruiting
Service Hématologique Centre Regional Traitement d'Hemophilie Bicetre Le Kremlin-Bicêtre France Recruiting
Service d'Hématologie Pédiatrique Hôpital Universitaire La Timone Marseille Cedex-05 France Recruiting
Centre de traitement des hémophiles Hôpital Universitaire Purpan Toulouse France Recruiting
Charité Campus Virchow Klinikum, Klinik für Pädiatrie m.S. Onkologie und Hämatologie Berlin Germany Recruiting
Department of Internal Medicine, Hemophilia Treatment Center, Vivantes Klinikum im Friedrichshain Berlin Germany Recruiting
Institut für Experimentelle Hämatologie und Transfusionsmedizin Universitätsklinikum Bonn Bonn Germany Recruiting
Klinik Bremen-Mitte Prof.-Hess-Kinderklinik Bremen Germany Recruiting
Hämophilie Zentrum Rhein Main Frankfurt Germany Recruiting
University Hospital Frankfurt & Goethe University - Clinical and Molecular Hemostasis, Department of Pediatrics Frankfurt am Main Germany Recruiting
Dr. v. Haunersches Kinderspital University of Munich Munich Germany Recruiting
Haemophilia-Haemostasis Unit St. Sophia Children's Hospital Athens Greece Recruiting
Children's Health Ireland (CHI) at Crumlin Dublin Ireland Recruiting
The National Hemophilia Center Sheba Medical Center, Tel Hashomer Ramat Gan Israel Recruiting
Azienda Ospedaliero Universitaria Careggi Florence Italy Recruiting
Gaslini Hospital Genova Italy Recruiting
A. Bianchi Bonomi Hemophilia and Thrombosis Centre IRCCS Ca' Granda Ospedale Maggiore Policlinico Milan Italy Completed
Van Creveld Kliniek University Medical Center Utrecht Utrecht Netherlands Recruiting
Oslo University Hospital Oslo Norway Not Yet Recruiting
Centro Hospitalar São João, S. Imuno-hemoterapia Porto Portugal Recruiting
Unitat Hemofilia Hospital Vall d'Hebron Barcelona Spain Recruiting
Unidad de Coagulopatías Hospital Universitario La Paz Madrid Spain Recruiting
Hospital General Unidad de Hemofilia 1 Sur Hospitales Universitarios Virgen del Rocio Seville Spain Completed
Unidad de Coagulopatias Congenitas Hospital Universitario la Fe Valencia Spain Recruiting
Lund University Hospital Malmö Sweden Recruiting
Department of Pediatrics, Clinic of Coag. Disorders Karolinska Hospital Stockholm Sweden Recruiting
Inselspital Bern, University Children's Hospital Bern Switzerland Recruiting
Birmingham Children's Hospital NHS Trust - Department of Haematology Birmingham United Kingdom Recruiting
Royal Hospital for Sick Children Edinburgh United Kingdom Completed
Department of Haematology Royal Hospital for Sick Children Glasgow United Kingdom Recruiting
Haemophila Center Great Ormond Street Hospital for Children London United Kingdom Completed
Official registry record

This page summarises publicly available registry data for informational purposes — not medical advice. Eligibility is determined by each study team; patients should discuss participation with their clinician.

View NCT02979119 on ClinicalTrials.gov ↗ ← All trials in Sweden