Registry following children with haemophilia across Europe over time
Collects long-term data on children with haemophilia A or B, including bleeding and treatment effects.
Plain-language title generated from the registry record
Registry title: The European Paediatric Network for Haemophilia Management ( PedNet Registry)
Key facts
- Where
- Le Kremlin-Bicêtre, Marseille Cedex-05, and Toulouse, FranceSee the 3 sites
Where in France
- Service Hématologique Centre Regional Traitement d'Hemophilie BicetreLe Kremlin-Bicêtre, FranceTaking people
- Service d'Hématologie Pédiatrique Hôpital Universitaire La TimoneMarseille Cedex-05, FranceTaking people
- Centre de traitement des hémophiles Hôpital Universitaire PurpanToulouse, FranceTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- PedNet Haemophilia Research Foundation
- Trial code
- NCT02979119
- Record updated
- 16 September 2025
- Original description
Rationale:Read full original descriptionShow less
The European Paediatric Network for Haemophilia Management and the PedNet Haemophilia Registry
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.
Inclusion: 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: Patients referred because of an inhibitor*; Informed consent not obtained.