Governance of patient registries

Patient registries, which were designed for patients with shared characteristics, have been an important source of the data needed to assess clinical performance, provide health technology assessment or assess policy implications on a local, regional, national and in some cases international level. As a result, hundreds of registries have been set up, ranging from paper based spread-sheets in a physician’s office to international rare disease initiatives coupling clinical and genetic data as well as bio-banks.
In the last fifteen years information technology has enabled clinicians to collect, share, compare and analyse large amounts of patient data.
A recent EU-funded project has produced a set of Guidelines to provide practical advice on how to set up and manage patient registries as well as to enable secondary use of data for public health policy and research. These Guidelines should make life easier for those setting up new registries or redesigning already functioning registries and those exchanging data across registries.
To read the full 232 page Guidelines on the ec.europa.eu website