The European Paediatric Network for Haemophilia Management ( PedNet Registry)
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorPedNet Haemophilia Research Foundation
About this trial
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 criteria
Qualifiers
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
Disqualifiers
Patients referred because of an inhibitor*
Informed consent not obtained
Trial design
Treatments tested in this trial
- Not listed
Trial groups
4,000 Participants
are grouped into 4 trial groupsLocations
39Austria
Universitäts-Klinik für Kinder- und JugendheilkundeA-8036, Graz Austria
Medical University of Vienna - Department of Paediatrics Vienna Austria
Belgium
Service of Pediatric Haematology University Hospital LeuvenB-3000, Leuven Belgium
Canada
Division of Hematology/Oncology Hôpital St JustineH3T 1C5, Montreal Canada
Sponsors and collaborators
PedNet Haemophilia Research Foundation
Lead sponsor
Source ClinicalTrials.gov