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 groups