The European Paediatric Network for Haemophilia Management ( PedNet Registry)
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorPedNet Haemophilia Research Foundation
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.
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
Patients referred because of an inhibitor*
Informed consent not obtained