The European Paediatric Network for Haemophilia Management ( PedNet Registry)
Recruiting
Observational Study
Factor VIII Deficiency
Factor IX Deficiency
No Placebo Group
Every participant receives an active treatment — no one gets a placebo.
No Study Drug
Researchers observe your health over time — no experimental treatment is given.
At a Glance
- Sex
- Any
- Study type
- Observational
- Participants needed
- 4,000 (estimated)
- Sponsor
- PedNet Haemophilia Research Foundation · Other
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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.
Trial Locations
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Eligibility 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
Contacts