Key Aspects of Medical Practice in Patients With Haemophilia A
试验速览
- 阶段
- 不适用
- 状态
- 撤回
- 主要终点
- Outcome of factor replacement treatment
研究概览
简要总结
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.
详细描述
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.
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Prospective
入排标准
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •severe haemophilia A (factor VIII<1%)
- •moderate (factor VIII<5%)
- •signed informed consent
排除标准
- •Not fullfilling inclusion criteria
结局指标
主要结局
Outcome of factor replacement treatment
时间窗: 3 years
Joint disase according to HJHS. Quality of Life. Health economic evalaution.
次要结局
未报告次要终点