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.

Fakta om prosjektet

Project number: 75815


Professor Johan Askling, Karolinska Institutet.