Patient registries from the view of health policy

Integrated health data management and disease registries which are able to support evidence-based decision making are of critical importance for health policy. Data provided by disease registries are used for the development of health strategy, planning of preventive activities, capacity-building in health care provision, improving health care quality, and planning clinical trials. Disease registries monitoring epidemiology, natural history of diseases, treatment outcomes and the detection of adverse reactions are requested not only by policy-makers, but public health authorities and health care providers, too. Registries for rare diseases are of critical importance for developing network between reference centres and developing and evaluating new drugs. Data and information need for decision-making in public services and the protection of health data of individuals require a careful balance that needs to be taken into account when considering disease registries.