Data from clinical practice is needed to understand the safety, effectiveness, and optimal use of available and emerging treatment options for inﬂammatory arthritis. We have demonstrated the value of our individual registers in assessing the safety and effectiveness of TNF-inhibitors in RA, AS/SpA and PsA. Many outstanding issues, particularly in AS/SpA and PsA, can, however, only be addressed through collaboration across registers. The Nordic countries have similar healthcare systems and other national registers that can be linked together. ARTIS (Sweden), DAN-BIO (Denmark), NOR-DMARD (Norway), ROB-FIN (Finland) and ICEBIO (Iceland) represent some of the largest registers of inﬂammatory arthritis and their therapies.
Project LeadJ Askling
The scientific output from our project comes in the format of abstracts and original scientific reports. For the scientific community, the primary sharing of results is thus via scientific journals and international conferences.
For the research community, networking and building a Nordic network of the next generation of rheumatology researchers has been an integral part of our project. In this regard, our biannual project meetings have typically attracted some 20 participants, many of whom are junior scientists, and the “communication of results” has been in the format of communication of the possibility to work with, and also how to work with, collaborative studies centered on clinical issues addressed via clinical registers.
For the clinical profession and patients, we think that our results, particular those regarding the effectiveness and safety of drugs, should best be implemented as part of national treatment guidelines for the diseases concerned. Science is much about incremental knowledge gains. Each of the Nordic countries has its own algorithm for how these guidelines are updated. We regard this process as particularly important, as the guideline updates may systematically factor in all available new evidence. Beyond this, the project website has attracted attention (as measured by contacts taken with the project PI) from various of stakeholders, including patient organisations, the pharmaceutical industry, and e-health companies.