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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.

Key facts

Who runs it
PedNet Haemophilia Research Foundation
Where
Oslo, NorwaySee the siteAlso in 18 other countries, 38 sites
Trial code
Registry title
The European Paediatric Network for Haemophilia Management ( PedNet Registry)
Status
Recruiting
People taking part
4,000 people, planned
Started
Jun 2014
Expected to end
Dec 2039
Type of study
Observational, 4 groups
Record updated
16 September 2025

Who can take part

AI summary

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

The registry criteria, word for word

Show all 6 criteriaShow less

Who can take part

  • 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

Who cannot take part

  • Patients referred because of an inhibitor*
  • Informed consent not obtained

Where in Norway

Also in 18 other countries, 38 sites

  • Oslo University HospitalOslo, NorwayContact: Heidi Knüdsen, MDNot yet recruiting

About the trial

What the trial wants to find out

Rationale:

Read full original descriptionShow less

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.

The 4 groups in the trial

  • Cohort I

    Children with mild ( FVIII/IX 6 to 25%), moderate (FVIII/IX 1 to 5%) or severe (FVIII/IX \<1%) haemophilia A or B, born from January 1st 2000 until December 31st 2009 who have been or are to be treated with coagulation proteins in one of the participating centres

  • Cohort II

    Children with mild ( FVIII/IX 6 to 25%), moderate (FVIII/IX 1 to 5%) or severe (FVIII/IX \<1%) haemophilia A or B, born from January 1st 2010 until December 31st 2019 who have been or are to be treated with coagulation proteins in one of the participating centres

  • Cohort III

    Children with mild ( FVIII/IX 6 to 25%), moderate (FVIII/IX 1 to 5%) or severe (FVIII/IX \<1%) haemophilia A or B, born from January 1st 2020 until December 31st 2029 who have been or are to be treated with coagulation proteins in one of the participating centres

  • Cohort IV

    Cohort IV Group/Cohort Description: Children with mild ( FVIII/IX 6 to 25%), moderate (FVIII/IX 1 to 5%) or severe (FVIII/IX \<1%) haemophilia A or B, born from January 1st 2030 until December 31st 2039 who have been or are to be treated with coagulation proteins in one of the participating centres

Questions to ask the study team

  1. How often do I need to come in, and for how long each time?
  2. Are travel costs paid?
  3. Can I keep my own doctor?
  4. What happens if I want to stop?

Contact the study team: see the registry record → Contacts and Locations

Print a page for my doctor

Data and sources

Registry record
Listed on ClinicalTrials.gov.
Official title
The European Paediatric Network for Haemophilia Management and the PedNet Haemophilia Registry
Plain-language title
Registry following children with haemophilia across Europe over timeGenerated from the registry record. The registry title is the official one.
AI summary
From the trial's eligibility criteria. Read by machine on 12 November 2026.
Record updated
16 September 2025