Disease registries get common data standards

The European Commission has issued a set of requirements to improve the storing and distribution of data on rare diseases.

On 15 December, the Joint Research Centre and the Commission’s health and food safety directorate-general published 16 categories for rare disease data collection. These refer to patients’ personal data, diagnosis, care, and information for research purposes.

The aim of the minimum data requirements is to ensure that information in different European registries is comparable, the Commission said, adding that this is the first step in its efforts to develop a common registry, termed the EU RD Platform.