Registry following children with haemophilia across Europe over time
Collects long-term data on children with haemophilia A or B, including bleeding and treatment effects.
Plain-language title generated from the registry record
Registry title: The European Paediatric Network for Haemophilia Management ( PedNet Registry)
Key facts
- Where
- Dublin, IrelandSee the site
AI summary: who the study is looking for
From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.
The registry is looking for children with haemophilia A or B who are treated at one of the taking-part centres and have complete treatment and bleed records.
- Sex
- All sexes can join.
- Disease stage
- Haemophilia A or B with factor VIII/IX activity of <1 to 25%.
- Earlier treatment
- Complete records of factor treatment and bleeds must exist.
- Biomarker or test result
- Factor VIII/IX activity of <1 to 25%.
Main reasons for not taking part
- Patients referred because of an inhibitor
- Informed consent not obtained
Read by machine on 9 November 2026.
Where in Ireland
- Children's Health Ireland (CHI) at CrumlinDublin, IrelandTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- PedNet Haemophilia Research Foundation
- Trial code
- NCT02979119
- Record updated
- 16 September 2025
- Original description
Rationale:Read full original descriptionShow less
The European Paediatric Network for Haemophilia Management and the PedNet Haemophilia Registry
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.
Inclusion: 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: Patients referred because of an inhibitor*; Informed consent not obtained.