The European Paediatric Network for Haemophilia Management ( PedNet Registry)

Recruiting now NCT02979119

Run by PedNet Haemophilia Research Foundation · for All ages · All sexes

What this study is about

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.

Who can join (things the study team will check)

✅ You may be able to join if…

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

🚫 You may not be able to join if…

Patients referred because of an inhibitor*
Informed consent not obtained

Where this trial is running

Universitäts-Klinik für Kinder- und Jugendheilkunde, Graz, Austria
Medical University of Vienna - Department of Paediatrics, Vienna, Austria
Service of Pediatric Haematology University Hospital Leuven, Leuven, Belgium
Division of Hematology/Oncology Hôpital St Justine, Montreal, Canada
Division of Haematology/Oncology Hospital for Sick Children, Toronto, Canada
Haemophilia Comprehensive Care Centre, Centre for Thrombosis and Haemostasis Children's University Hospital Brno, Brno, Czechia
Department of Paediatric Haematology/oncology - University Hospital Motol, Prague, Czechia
Department of Pediatrics Århus Kommunehospital Skejby Sygehus, Aarhus, Denmark
Children's Hospital Helsinki University Hospital, Helsinki, Finland
Service Hématologique Centre Regional Traitement d'Hemophilie Bicetre, Le Kremlin-Bicêtre, France
Service d'Hématologie Pédiatrique Hôpital Universitaire La Timone, Marseille Cedex-05, France
Centre de traitement des hémophiles Hôpital Universitaire Purpan, Toulouse, France

+ 27 more sites.

Who to contact

Angelique Hermeling · +31850299993 · a.hermeling@pednet.eu

It's completely normal to call and ask questions before deciding anything. Mention the study ID: NCT02979119.

Open the interactive checklist for this trial →

Verify everything on the official ClinicalTrials.gov record. Page updated July 2026.

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