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Registry for managing hemophilia in children across Europe

The European Paediatric Network for Haemophilia Management and the PedNet Haemophilia Registry

Observational PedNet Haemophilia Research Foundation · NCT02979119

This study is collecting information about children with hemophilia A or B to see how different factors affect their bleeding patterns and treatment outcomes across Europe.

Quick facts

Study typeObservational
Enrollment4000 (estimated)
SexAll
SponsorPedNet Haemophilia Research Foundation Academic / other
Locations39 sites (Graz and 38 other locations)
Trial IDNCT02979119 on ClinicalTrials.gov

What this trial studies

This observational study aims to collect comprehensive clinical data on children diagnosed with hemophilia A or B, focusing on factors influencing bleeding patterns and inhibitor development. It involves a multicenter approach, gathering information from various treatment centers to ensure a complete cohort and prevent selection bias. The study will document patient characteristics, treatment details, and long-term outcomes without altering routine clinical care or increasing patient burden.

Who should consider this trial

Good fit: Ideal candidates are children diagnosed with hemophilia A or B, with Factor VIII/IX activity levels between 1% and 25%.

Not a fit: Patients referred specifically due to the presence of inhibitors may not benefit from this study.

Why it matters

Potential benefit: If successful, this registry could lead to improved clinical guidelines and better management of hemophilia in children.

How similar studies have performed: Other similar observational studies have shown success in improving understanding and management of rare diseases through collaborative data collection.

Eligibility criteria

Show full inclusion / exclusion 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

Where this trial is running

Graz and 38 other locations

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
View on ClinicalTrials.gov → Find more trials like this →
Conditions Factor VIII DeficiencyFactor IX DeficiencyHemophiliaChildrenInhibitorsProphylaxisLong-term outcomeCongenital
Last reviewed 2026-06-10 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.