Key Aspects of Medical Practice in Patients With Haemophilia A

Withdrawn

• Conditions: Joint Disease
• Interventions: Biological: Factor VIII replacement

• Registration Number: NCT02996942
• Lead Sponsor: Lund University

Brief Summary

The KAPPa project has the aim to create an international database in which information about clinical features, therapeutic management, burden of illness and costs of severe and moderate haemophilia A patients from different countries and sites is collected. The aim of this project is to analyse the influence of such different characteristics on medical, psychosocial and economic outcomes in patients over the long-term.

Detailed Description

1000 patients with hemophilia A will be enrolled using a webbased registry. Key quality factors that will be registered are : hemophilia joint Health score (HJHS), annual bleed rate, quality of Life (EQ5D), as well as dosing of replacement therapy.

Study Timeline

• Study Start: 2012-07
• Study First Submitted: 2014-05-19
• Study First Submitted QC: 2016-12-14
• Study First Posted: 2016-12-19
• Primary Completion: 2017-12
• Study Completion: 2017-12
• Status Verified: 2018-12
• Last Update Submitted: 2018-12-19
• Last Update Posted: 2018-12-21

Recruitment & Eligibility

• Status: WITHDRAWN
• Sex: All
• Target Recruitment: Not specified

Inclusion Criteria

or forms.

• severe haemophilia A (factor VIII<1%)
• moderate (factor VIII<5%)
• signed informed consent

Exclusion Criteria

• Not fullfilling inclusion criteria

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Arm && Interventions

Group	Intervention	Description
Replacement therapy	Factor VIII replacement	Hemophilia A receiving replacement therapy (prophylaxis or on demand)

Primary Outcome Measures

Name	Time	Method
Outcome of factor replacement treatment	3 years	Joint disase according to HJHS. Quality of Life. Health economic evalaution.