The European Paediatric Network for Haemophilia Management ( PedNet Registry)

Recruiting

• Conditions: Factor VIII Deficiency; Factor IX Deficiency

• Registration Number: NCT02979119
• Lead Sponsor: PedNet Haemophilia Research Foundation

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Study Start: 2014-10-21
• Last Update Posted: 2 September 2024

Recruitment & Eligibility

• Status: Recruiting
• Sex: All
• Target Recruitment: 4000

Inclusion Criteria

Inclusion Criteria:<br><br> - Diagnosed with Haemophilia A or B<br><br> - Factor VIII/ IX activity of <1 to 25%<br><br> - Complete records of Factor treatment and bleeds<br><br> - Treated in one of the participating centres<br><br>Exclusion Criteria:<br><br> - Patients referred because of an inhibitor*<br><br> - Informed consent not obtained

Exclusion Criteria

Not provided

Study & Design

• Study Type: Observational [Patient Registry]
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Number of patients with antibody development to exogenous clotting factors

Secondary Outcome Measures

Name	Time	Method
Long term outcome of haemophilia on joint status using the Hemophilia Joint Health Score (HJHS) and MRI techniques.;Long term outcome different Immune Tolerance Induction (ITI) therapies in patients with inhibitor.