A Nordic Rheumatology Register Pilot to facilitate collaborative studies based on linkages of clinical data with national health

The objective of this proposal is to pilot different technical solutions to enable Nordic collaborative research based on linkage of clinical registers to national health- and socio-economy registers. Chronic inflammatory diseases such as rheumatoid arthritis and spondylarthritis confer substantial individual suffering and significant economic burdens to health care and society, and exemplify the increasing challenges for welfare societies through rapid introduction of targeted therapies for diseases characterized by high costs and uncertain optimal treatment. To address these challenges, sufficiently large study populations combined with clinical detail are needed, calling for novel research infrastructures.

With similar health-care systems, national registers, health and treatment paradigms for RA and SpA, large clinical registers, epidemiological know-how and experiences from collaborative studies, the prospects for establishing a Nordic rheumatology collaborative register-based infrastructure for clinical research are particularly good. At present, however, studies based on register-linkages on the Nordic level often include copying datasets, physical data migration, and one-off solutions neither of which are optimal from a scientific, logistic, or data protection perspective. Instead, generic solutions that allow for secure pan-Nordic studies based on linked individual-patient data without physical data transfer are needed.

Our strategy is (i) to assemble or further improve research infrastructures based on linkages of clinical registers on the national level, (ii) to pilot three different technical approaches for collaborative analyses based on national linkages, on the Nordic level, (iii) to use these platforms to address clinical and societal needs related to chronic inflammatory diseases, and (iv) to evaluate permissive factors and bottlenecks to be resolved in order to turn our pilot into a generic model for enriched and competitive Nordic clinical research. Our proposal will be a generic demonstrator of how register-linkages may offer substantial leverage of public investments, and how the created data infrastructure will enable not just ground-breaking research but also Nordic competitiveness in important sectors of medical research in which the Nordic countries have traditionally had a strong position but in which new development is needed in order to remain in lead: clinical trials, post-marketing safety studies, and outcomes research.


Maria Nilsson

Maria Nilsson

Special Adviser