Pan-Nordic RA register network

Concept

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.

Facts and figures

Project lead
J Askling
Karolinska Institutet
johan.askling@ki.se
FOREUM research grant: € 297.685
2017 - 2020

Meet the team

J Askling
Karolinska Institutet
M Lund Hetland
Rigshospitalet
E Lie
Diakonhiemmet University of Oslo
D Nordström
Helsinki University Gentral Hospital
B Gudbjörnsson
University of Iceland

Objectives

To establish a standing network across the five Nordic Rheumatology registers, and to use this network for studies of clinical questions in Rheumatoid Arthritis (RA), Spondyloarthropathies (AS/SpA), and Pso- riatic Arthritis (PsA).

Patient voice

We have established a Patient Advisory Panel that is participating in the project meetings, and influence the research agenda e.g., via the formulation of specific research questions. Liaison between the project and the national patient organizations on general issues such as data protection and perceptions of personal/data integrity, and, depending on focus, to suggest additional patient research partners for the specific projects.

Interim results

Within the collaboration, several projects addressing specific research questions have been initiated. Whilst most of these are ongoing, some have been reported. For instance, we are investigating the use and comparative effectiveness of TNFi biosimilars, the comparative safety of non-TNFi-biologics, the use of biologics in the context of pregnancies and in patients with malignancies, and treatment outcomes following biologics use in patients with spondyloarthropathies. Several additional projects are also being launched.

Publications

  • Grøn KL, Arkema EV, Glintborg B The ARTIS Study Group, et al. Risk of serious infections in patients with rheumatoid arthritis treated in routine care with abatacept, rituximab and tocilizumab in Denmark and Sweden. Annals of the Rheumatic Diseases 2019;78:320-327.
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  • B Glintborg, U Lindström, K Aaltonen, EK Kristianslund, B Gudbjornsson, K Chatzidionysiou, J Askling, D Nordström, ML Hetland, D Di Giuseppe, L Dreyer, LE Kristensen, TS Jørgensen, K Eklund, G Grondal, S Ernestam, J Joensuu, MRK Törmänen, H Skydsgaard, J Hagfors, TK Kvien, E Lie, K Fagerli, AJ Geirsson, H Jonsson, SA Provan, NS Krogh & LTH Jacobsson (2018) Biological treatment in ankylosing spondylitis in the Nordic countries during 2010–2016: a collaboration between five biological registries, Scandinavian Journal of Rheumatology, DOI: 10.1080/03009742.2018.1444199
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  • Chatzidionysiou K, Hetland ML, Frisell T, et al. Opportunities and challenges for real-world studies on chronic inflammatory joint diseases through data enrichment and collaboration between national registers: the Nordic example. RMD Open 2018;4:e000655. doi: 10.1136/rmdopen-2018-000655
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  • Glintborg B, Lindström U, Aaltonen K, Kristianslund EK, Gudbjornsson B, Chatzidionysiou K, Askling J, Nordström D, Lund Hetland M, Di Giuseppe D, Dreyer L, Jørgensen TS, Kristensen LE, Eklund K, Grondal G, Ernestam S, Joensuu J, Kvien TK, Lie E, Fagerli KM, Geirsson AJ, Jonsson H, Jacobsson LT. First Line Biological Treatment in Ankylosing Spondylitis, Prescription Rates, Baseline Demographics and Disease Activity. a Collaboration between Biological Registers in the Five Nordic Counties [abstract]. Arthritis Rheumatol. 2017; 69 (suppl 10).
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  • Lederballe Grøn K, Arkema EV, Glintborg B, Askling J, Lund Hetland M. Baseline Characteristics and Rates of Hospitalized Infections in Patients with Rheumatoid Arthritis Treated with Non-TNF Inhibitors in Denmark and Sweden [abstract]. Arthritis Rheumatol. 2017; 69 (suppl 10).
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  • Glintborg B, Chatzidionysiou K, Askling J, et al. THU0361 Prescription patterns of biological disease modifying drugs and biosimilars in ankylosing spondylitis – a collaboration between biological registers in the five nordic countries. Annals of the Rheumatic Diseases 2017;76:341-342
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  • Hetland M, Østergaard M, Askling J, et al. FRI0450 Commonalities and differences in data collection across european spondyloarthritis registries. Annals of the Rheumatic Diseases 2017;76:656-657.
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  • Jørgensen T, Dreyer L, Guðbjörnsson B, et al. FRI0518 Prescription patterns of tumour necrosis factor inhibitor and ustekinumab in psoriatic arthritis: a nordic population-based cohort study. Annals of the Rheumatic Diseases 2017;76:686.
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  • Chatzidionysiou K, Aaltonen K, Nordström D, et al. SAT0669 How do we use biologics in patients with a history of malignancy? an assessment of treatment patterns using scandinavian registers. Annals of the Rheumatic Diseases 2017;76:1027.
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  • Hellgren K, Dreyer L, Arkema EV For the ARTIS Study Group, For the DANBIO Study Group, et al. Cancer risk in patients with spondyloarthritis treated with TNF inhibitors: a collaborative study from the ARTIS and DANBIO registers. Annals of the Rheumatic Diseases 2017;76:105-111.
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Abstracts EULAR 2019

  • OP0236: Similar one-year treatment retention of originator and biosimilar Etanercept. Results of a Nordic collaboration including 1015 patients with Spondyloarthritis
  • FRI0082: Effectiveness of TNF inhibitors vs. non-TNF inhibitors (Abatacept, Tocilizumab and Rituximab)
  • FRI0377: Identical two-year treatment retention of originator and biosimilar Infliximab. Results of a Nordic collaboration including 1319 patients with Spondyloarthritis
  • SAT0365: Secular changes in patients with psoriatic arthritis starting first and subsequent course of biologic therapies – inflammatory hallmarks of lesser prominence: a Nordic population-based cohort study