Policy makers, researchers, healthcare professionals and many others are daily facing the challenge of\ud
how to prioritise their activities and actions in different areas of their responsibilities. In the health\ud
area, their decisions are often influenced by the reality of the needs of an aging population on the one\ud
hand and restricted resources on the other. They can only make as good informed decisions as the\ud
quality and availability of data they use in the process.\ud
Patient registries, which were designed for patients with sharing characteristics (diagnosis, implanted\ud
device, therapy, risk of developing a disease), have for decades served as an important source of the\ud
data needed to assess clinical performance, provide health technology assessment or assess policy\ud
implications on a local, regional, national and in some cases international level. As a result, hundreds\ud
of registries have been set up, ranging from paper based spreadsheets in a physician’s office to\ud
international rare disease initiatives coupling clinical and genetic data as well as bio-banks. In the last\ud
fifteen years information technology has given us an opportunity to greatly redesign the way we make\ud
informed decisions about individual patients as well as entire populations by, among other things,\ud
enabling clinicians to collect, share, compare and analyse large amounts of patient data