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

Patient voice

A Patient Advisory Panel was established that has influenced 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 specific projects.

Final results

  • A standing collaborative network of clinical rheumatology researchers across the five Nordic countries was established, in the fields of RA, AS/SpA and PsA.
  • In Sweden, Denmark, Norway, Finland and Iceland, linkages of the clinical register data to other national registers have been extended (SE, DK, FI and ICE) or performed for the first time (NO). This project is one of the first to employ export of patient-level data from these registers for central analysis, for all countries.
  • In each of the specific projects performed, variables and definitions have been harmonised. One key learning so far is that this harmonisation is not only of technical nature, but also of contextual nature.
  • Various analytical approaches have been employed, spanning from distributed (local) analyses using common data models and analysis protocols, via central analyses of (harmonised) pooled data, to federated analyses using local and harmonised data but a common central analysis-protocol.
  • This project has successfully launched projects in different areas, see the list of abstracts/publications for projects.

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, 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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  • 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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  • Glintborg B, Lindstrom U, De Giuseppe D, Provan SA, Gudbjornsson B, Hetland ML, Michelsen B, Wallman J, Aaltonen K, Hokkanen AM, Nordström D, Jørgensen TS, Hansen RL, Jon Geirsson A, Grøn K, Krogh NS, Askling J, Kristensen LE, Jacobsson   L; DANBIO (Denmark), ARTIS/SRQ (Sweden), ICEBIO (Iceland), ROB-FIN (Finland), NOR-DMARD (Norway) registries. One-year treatment outcomes of secukinumab versus tumor necrosis factor inhibitors in Spondyloarthritis. Arthritis Care Res (Hoboken). 2020 Nov 30. doi: 10.1002/acr.24523. Epub ahead of print. PMID:   33253491
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  • U Lindström, B Glintborg, D Di Giuseppe, TS Jörgensen, B Gudbjornsson, KL Görn, SA Provan, B Michelsen, ML Hetland, JK Wallman, D Nordström, N Trokovic, TJ Love, NS Krogh, J Askling, LTH Jacobsson, LE Kristensen.
    Comparison of treatment retention and response to secukinumab versus tumor necrosis factor inhibitors in psoriatic arthritis. Rheumatology 2020 doi.org/10.1093/rheumatology/keaa825
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  • Lund Hansen R, Schoedt Jørgensen T, Dreyer L, Hetland ML, Glintborg B, Askling J, Di Giuseppe D, Jacobsson LTH, Wallman JK, Nordstrom D, Aaltonen K, Kristianslund EK, Kvien TK, Provan SA, Gudbjornsson B, Love TJ, Kristensen LE.
    Inflammatory hallmarks of lesser prominence in psoriatic arthritis patients starting biologics: a Nordic population-based cohort study. Rheumatology (Oxford). 2020 Jun 27:keaa237. doi: 10.1093/rheumatology/keaa237. Epub ahead of print. PMID: 32591790.  
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  • Kopp TI, Delcoigne B, Arkema EV, Magyari M, Locht H, Sellebjerg FT, Cordtz   RL, Jensen DV, Askling J, Dreyer L. Response to: 'Neuroinflammatory events after anti-TNFα therapy' by Kaltsonoudis et al. Ann Rheum Dis. 2020 May 20:annrheumdis-2020-217802. doi: 10.1136/annrheumdis-2020-217802. Epub ahead of print. PMID: 32434821
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  • Kopp TI, Delcoigne B, Arkema EV, Jacobsen RK, Magyari M, Ibfelt EH, Locht H, Sellebjerg F, Cordtz RL, Jensen DV, Askling J, Dreyer L. Risk of neuroinflammatory events in arthritis patients treated with tumour necrosis factor alpha inhibitors: a collaborative population-based cohort study from Denmark and Sweden. Ann Rheum Dis. 2020 May;79(5):566-572. doi: 10.1136/annrheumdis-2019-216693. Epub 2020 Mar 11. PMID: 32161058
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  • Lindström U, Glintborg B, Di Giuseppe D, Nordström D, Aarrestad Provan S, Gudbjornsson B, Askling J, Lund Hetland M, Aaltonen K, Krogh NS, Geirsson AJ, Jacobsson LTH. Treatment retention of infliximab and etanercept originators  versus their corresponding biosimilars: Nordic collaborative observational study of 2334 biologics naïve patients with spondyloarthritis. RMD Open. 2019 Oct  23;5(2):e001079. doi: 10.1136/rmdopen-2019-001079. PMID: 31749988; PMCID: PMC6827791.
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EULAR Abstracts

2017

  • SAT0669: How do we use biologics in patients with a history of malignancy? An assessment of treatment patterns using Scandinavian registers.

2018

  • OP0324: Risk of serious infections in rheumatoid arthritis patients treated with abatacept, rituximab and tocilizumab in denmark and sweden

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
  • OP0005: Incidence of overall and site-specific cancers in TNF inhibitor treated patients with psoriatic arthritis: a population-base cohort study from 4 Nordic countries
  • OP0261: Risk of neurological adverse events during tumour necrosis factor inhibitor treatment for arthritis: a population-base cohort study from DANBIO AND ARTIS

2020

  • THU0394: Comparison of treatment retention of secukinumab and TNF-inhibitors in psoriatic arthritis. Observational data from a Nordic collaboration.
  • FRI0275: One-year treatment retention of secukinumab versus tumor necrosis factor inhibitors in Spondyloarthritis. Results from Five Nordic biologic registries
  • FRI0534: Patient-reported measures of disease activity in rheumatoid arthritis vary across the Nordic countries, results from a Nordic collaboration

Go to EULAR Abstract Archive

ACR Abstracts

2017

  • 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. Arthritis Rheumatol. 2017; 69 (suppl 10).
  • 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).

Go to ACR Abstract Archive