Joint Disease
Conditions
Keywords
haemophilia, joint disease, quality of life
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.
Interventions
Patients receive their usual treatment
Sponsors
Study design
Eligibility
Inclusion criteria
or forms. * severe haemophilia A (factor VIII\<1%) * moderate (factor VIII\<5%) * signed informed consent
Exclusion criteria
* Not fullfilling inclusion criteria
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Outcome of factor replacement treatment | 3 years | Joint disase according to HJHS. Quality of Life. Health economic evalaution. |