Comparison of characteristics of international and national databases for rheumatoid arthritis: A systematic literature review

Scandinavian Journal of Rheumatology

Volumn 43, Issue 5, 2014, Pages 349-355

  Gvozdenović, Emilia ^a   Koevoets, R ^a   Langenhoff, J ^a   Allaart, C F ^a   Landewe R B M ^b  

^a LEIDEN UNIVERSITY MEDICAL CENTER   (Netherlands)

^b ACADEMIC MEDICAL CENTER   (Netherlands)

Author keywords

[No Author keywords available]

Indexed keywords

C REACTIVE PROTEIN; DISEASE MODIFYING ANTIRHEUMATIC DRUG; INFLIXIMAB; NONSTEROID ANTIINFLAMMATORY AGENT; RITUXIMAB;

ARTICLE; DATA BASE; ERYTHROCYTE SEDIMENTATION RATE; EUROPE; FOLLOW UP; FUNDING; HUMAN; INFORMATION PROCESSING; JOINT RADIOGRAPHY; OUTCOME ASSESSMENT; PATIENT CARE; PRACTICE GUIDELINE; PRIORITY JOURNAL; PUBLICATION; REGISTER; RHEUMATOID ARTHRITIS; SYSTEMATIC REVIEW; ARTHRITIS, RHEUMATOID; CLASSIFICATION; COMPARATIVE STUDY; FACTUAL DATABASE; INTERNATIONAL COOPERATION; MOTIVATION; PATIENT SELECTION; STANDARDS; STATISTICS AND NUMERICAL DATA;

ARTHRITIS, RHEUMATOID; DATA COLLECTION; DATABASES AS TOPIC; DATABASES, FACTUAL; EUROPE; GOALS; HUMANS; INTERNATIONALITY; PATIENT SELECTION; REGISTRIES;

EID: 84921787134     PISSN: 03009742     EISSN: 15027732     Source Type: Journal    
DOI: 10.3109/03009742.2014.887767     Document Type: Article

References (40)

1. Gogus F, Yazici Y, Yazici H. Inclusion criteria as widely used for rheumatoid arthritis clinical trials: patient eligibility in a Turkish cohort. Clin Exp Rheumatol 2005;23:681.
2. Sokka T, Pincus T. Eligibility of patients in routine care for major clinical trials of antitumor necrosis factor agents in rheumatoid arthritis. Arthritis Rheum 2003;48:313-18.
3. Sokka T, Pincus T. Most patients receiving routine care for rheumatoid arthritis in 2001 did not meet inclusion criteria for most recent clinical trials or American College of Rheumatology criteria for remission. J Rheumatol 2003;30:1138-46.
4. Sokka T, Kautiainen H, Toloza S, Makinen H, Verstappen SM, Lund HM, et al. QUEST-RA: quantitative clinical assessment of patients with rheumatoid arthritis seen in standard rheumatology care in 15 countries. Ann Rheum Dis 2007;66:1491-6.
5. Curtis JR, Jain A, Askling J, Bridges SL Jr, Carmona L, Dixon W, et al. A comparison of patient characteristics and outcomes in selected European and U.S. rheumatoid arthritis registries. Semin Arthritis Rheum 2010;40:2-14.e1.
6. Zink A, Askling J, Dixon WG, Klareskog L, Silman AJ, Symmons DPM. European biologicals registers: methodology, selected results and perspectives. Ann Rheum Dis 2009;68:1240-6.
7. Moher D, Liberati A, Tetzlaff J, Altman DG. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Ann Intern Med 2009;151:264-9.
8. Man JP, Weinkauf JG, Tsang M, Sin JHD. Why do some countries publish more than others? An international comparison of research funding, English proficiency and publication output in highly ranked general medical journals. J Clin Epidemiol 2004; 19:811-17.
9. Chatzidionysiou K, Lie E, Nasonov E, Lukina G, Hetland ML, Tarp U, et al. Highest clinical effectiveness of rituximab in autoantibody-positive patients with rheumatoid arthritis and in those for whom no more than one previous TNF antagonist has failed: pooled data from 10 European registries. Ann Rheum Dis 2011;70:1575-80.
10. Koevoets R, Allaart CF, van der Heijde DM, Huizinga TW. Disease activity monitoring in rheumatoid arthritis in daily practice: experiences with METEOR, a free online tool. J Rheumatol 2010;37:2632-3.
11. Hetland ML. DANBIO - powerful research database and electronic patient record. Rheumatology (Oxford) 2011;50:69-77.
12. Watson K, Symmons D, Griffiths I, Silman A. The British Society for Rheumatology Biologics Register. Ann Rheum Dis 2005;64 (Suppl 4):iv42-3.
13. Zink A, Listing J, Klindworth C, Zeidler H. The national database of the German Collaborative Arthritis Centres: I. Structure, aims, and patients. Ann Rheum Dis 2001;60:199-206.
14. Zink A, Listing J, Strangfeld A, Gromnica-Ihle E, Demary W, Schneider M. Dose adjustment in patients treated with infliximab in routine rheumatologic care in Germany. Results from the Biologics Register RABBIT [in German]. Z Rheumatol 2006;65:441-6.
15. van Vollenhoven RF, Askling J. Rheumatoid arthritis registries in Sweden. Clin Exp Rheumatol 2005;23:S195-200.
16. Young A, Dixey J, Williams P, Prouse P, Cox N, Kiely P, et al. An evaluation of the strengths and weaknesses of a register of newly diagnosed rheumatoid arthritis, 1986-2010. Rheumatology (Oxford) 2011;50:176-83.
17. Symmons DP, Silman AJ. The Norfolk Arthritis Register (NOAR). Clin Exp Rheumatol 2003;21:S94-9.
18. Langenegger T, Fransen J, Forster A, Seitz M, Michel BA. [Clinical quality management in rheumatoid arthritis], in German. Z Rheumatol 2001;60:333-41.
19. Combe B. The French early arthritis registry. Clin Exp Rheumatol 2003;21:S123-8.
20. Sany J, Cohen JD, Combescure C, Bozonnat MC, Roch-Bras F, Lafon G, et al. Medico-economic evaluation of infliximab in rheumatoid arthritis - prospective French study of a cohort of 635 patients monitored for two years. Rheumatology (Oxford) 2009;48:1236-41.
21. Vander Cruyssen B, Durez P, Westhovens R, Kaiser MJ, Hoffman I, De Keyser F; MIRA Study Group. The Belgian MIRA (MabThera In Rheumatoid Arthritis) registry: clues for the optimization of rituximab treatment strategies. Arthritis Res Ther 2010;12:R169.
22. Carbonell J, Cobo T, Balsa A, Descalzo MA, Carmona L. The incidence of rheumatoid arthritis in Spain: results from a nationwide primary care registry. Rheumatology (Oxford) 2008; 47:1088-92.
23. Dostal C, Pavelka K, Zvarova J, Hanzlicek P, Olejarova M. Some principles of the development of a clinical database/national register of selected inflammatory rheumatic diseases in the Czech Republic. Int J Med Inform 2006;75:216-23.
24. In: Rheumatology BSR and BHPR Conference Abstracts. Grigor C, Porter D, Toner V, Stirling A, McEntegart A. Clinical Audit of Care in Rheumatoid Arthritis (CARA). Rheumatology 2010; 49 1 Suppl, Abstract 49 R 73.
25. Canhao H, Faustino A, Martins F, Fonseca JE. Reuma.pt - the rheumatic diseases Portuguese register. Acta Reumatol Port 2011;36:45-56.
26. Nikolaisen C, Kvien TK, Mikkelsen K, Kaufmann C, Rodevand E, Nossent JC. Contemporary use of disease-modifying drugs in the management of patients with early rheumatoid arthritis in Norway. Scand J Rheumatol 2009;38:240-5.
27. Kiely P, Williams R, Walsh D, Young A. Contemporary patterns of care and disease activity outcome in early rheumatoid arthritis: the ERAN cohort. Rheumatology (Oxford) 2009;48:57-60.
28. Marchesoni A, Govoni M, Valentini G, Valesini G, Salaffi F, Macchioni P, et al. The Italian registry of aggressive rheumatoid arthritis - the GIARA project. J Rheumatol 2007;34:2374-81.
29. Ferraz-Amaro I, Machin S, Carmona L, Gonzalez-Alvaro I, Diaz-Gonzalez F. Pattern of use and safety of non-steroidal anti-inflammatory drugs in rheumatoid arthritis patients. A prospective analysis from clinical practice. Reumatol Clin 2009;5:252-8.
30. Gomez-Reino JJ, Rodriguez-Lozano C, Campos-Fernandez C, Montoro M, Descalzo MA, Carmona L. Change in the discontinuation pattern of tumour necrosis factor antagonists in rheumatoid arthritis over 10 years: data from the Spanish registry BIOBADASER 2.0. Ann Rheum Dis 2012;71:382-5.
31. Neovius M, Simard J, Sundstrom A, Jacobsson L, Geborek P, Saxne T, et al. Generalisability of clinical registers used for drug safety and comparative effectiveness research: coverage of the Swedish Biologics Register. Ann Rheum Dis 2011;70:516-19.
32. Virkki LM, Valleala H, Takakubo Y, Vuotila J, Relas H, Komulainen R, et al. Outcomes of switching anti-TNF drugs in rheumatoid arthritis - a study based on observational data from the Finnish Register of Biological Treatment (ROB-FIN). Clin Rheumatol 2011;30:1447-54.
33. Young A, Dixey J, Cox N, Davies P, Devlin J, Emery P, et al. How does functional disability in early rheumatoid arthritis (RA) affect patients and their lives? Results of 5 years of follow-up in 732 patients from the Early RA Study (ERAS). Rheumatology (Oxford) 2000;39:603-11.
34. th - 12th, 2010. Gudbiörnsson B. Scandinavian arthritis registries - Iceland. Scand J Rheumatol 2010:39. Suppl 124. Abstract S8b.
35. Kvien TK, Heiberg, Lie E, Kaufmann C, Mikkelsen K, Nordvag BY, et al. A Norwegian DMARD register: prescriptions of DMARDs and biological agents to patients with inflammatory rheumatic diseases. Clin Exp Rheumatol 2005;23:S188-94.
36. Lapadula G, Ferraccioli G, Ferri C, Punzi L, Trotta F. GISEA: an Italian biological agents registry in rheumatology. Reumatismo 2011;63:155-64.
37. Mariette X, Gottenberg JE, Ravaud P, Combe B. Registries in rheumatoid arthritis and autoimmune diseases: data from the French registries. Rheumatology (Oxford) 2011;50:222-9.
38. Naredo E, Moller I, Cruz A, Carmona L, Garrido J. Power Doppler ultrasonographic monitoring of response to anti-tumor necrosis factor therapy in patients with rheumatoid arthritis. Arthritis Rheum 2008;58:2248-56.
39. Sidiropoulos P, Flouri I, Drosos A, Boki K, Papadopoulos I, Skopouli F, et al. Long-term follow-up of RA patients of the Hellenic biologies registry: comparison of first versus second anti-TNF-alpha therapy. Clin Exp Rheumatol 2009;27:708.
40. Vander Cruyssen B, Durez P, Westhovens R, De Keyser F. Seven-year follow-up of infliximab therapy in rheumatoid arthritis patients with severe long-standing refractory disease: attrition rate and evolution of disease activity. Arthritis Res Ther 2010;12:R77.