The European Paediatric Network for Haemophilia Management ( PedNet Registry)

• Status: Recruiting
• Trial end date: 0000-00-00
• Target enrollment: 2200
• Participant gender: Both

Summary

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.

• Phase: N/A
• Accepts Healthy Volunteers?: No

Details

• Lead Sponsor: UMC Utrecht
• Collaborator: Lund University Hospital
• Treatments: Factor VIII
• Last Updated: 2016-11-28

Criteria

Inclusion Criteria:

• 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 Criteria:

• Patients referred because of an inhibitor*

• Informed consent not obtained