Nordic biobanks and registers

The report describes a knowledge base for cross-border development of research that uses Nordic registers, biobanks and clinical studies, and offers suggestions for policy implications. Separate reports are provided on the Nordic Trial Alliance (NTA), the Nordic eScience Action Plan 2.0 and Open Access to research data from a Nordic perspective.This report focuses on registers and biobanks as research infrastructures for innovative research on health and welfare. The Nordic countries have very similar and unique healthcare and welfare systems. The personal identification number (PIN) for each citizen makes it possible to carry out longitudinal research and research based on a combination of health registers (e.g. healthcare data, biobanks, register on the prevalence of different diseases and causes of death) and social registers (e.g. education, employment, migration, gender representation in democratic decision-making). In contrast to the rest of the world, the Nordic countries have very long time series at the population level, considered to be a unique “goldmine” for research. The proposed longitudinal data infrastructure is particularly well suited to studying changes in the Nordic welfare model over time and for setting up a unique basis for personalised medicine/precision medicine that could guide medical practice in real time, including social and behavioural aspects.