Nottingham University Hospitals, Nottingham, UK.
Haemophilia. 2014 May;20 Suppl 4:121-9. doi: 10.1111/hae.12406.
Clinical registries or databases have an increasing role in the management of inherited bleeding disorders. Initially, research-based registries provided valuable data and now national databases are increasingly being developed with multiple stakeholders, including persons with haemophilia (PWH) and payers, to enable improvements and efficiencies in care. Registries are extending to international collaborations to collect adverse event data and comparisons of national approaches to the management of haemophilia to improve the availability of product to PWH.
临床注册系统或数据库在遗传性出血性疾病的管理中发挥着越来越大的作用。最初,以研究为基础的注册系统提供了有价值的数据,现在,越来越多的国家数据库正在与多方利益相关者(包括血友病患者和支付方)共同开发,以提高护理质量和效率。注册系统正在扩展到国际合作,以收集不良事件数据,并比较各国对血友病管理的方法,从而改善血友病患者对产品的可及性。