REVIEW PAPER
Medical registers in rheumatology: do we need a rheumatology register in Poland?
Online publication date: 2012-11-06
Reumatologia 2012;50(5):416-424
KEYWORDS
ABSTRACT
There is no single comprehensive definition of the term “medical register”. This term generally covers all kinds of database that store clinical information collected in connection with patients’ treatment. Currently, the most popular are the disease or drug registries.
Medical registries in rheumatology are a key source of information for epidemiological purposes as well as for assessment of safety and effectiveness of treatment. In the world in the last 20 years there has been a significant increase of registries. Now, in relation to admission of new drugs, the fast development of biologicals registers is observed. Biologicals registers were created on the turn of the 20th and 21st century in the UK, Sweden, Germany, Spain, Norway, Denmark, the Netherlands and Switzerland. Other European countries either are in the process of creating their own registries or use other data sources.
Medical registries in rheumatology are a key source of information for epidemiological purposes as well as for assessment of safety and effectiveness of treatment. In the world in the last 20 years there has been a significant increase of registries. Now, in relation to admission of new drugs, the fast development of biologicals registers is observed. Biologicals registers were created on the turn of the 20th and 21st century in the UK, Sweden, Germany, Spain, Norway, Denmark, the Netherlands and Switzerland. Other European countries either are in the process of creating their own registries or use other data sources.
REFERENCES (29)
1.
Drolet BC, Johnson KB. Categorizing the world of registries. J Biomed Inform 2008; 41: 1009-1020. .
2.
Solomon DJ, Henry RC, Hogan JG, et al. Evaluation and implementation of public health registries. Public Health Rep 1991; 106: 142-150.
3.
van der Veer SN, de Keizer NF, Ravelli AC, et al. Improving quality of care. A systematic review on how medical registries provide information feedback to health care providers. Int J Med Inform 2010; 79: 305-323.
4.
Gladman D, Menter A. Introduction/overview on clinical registries. Ann Rheum Dis 2005; 64 (Suppl 2): ii101-ii102.
5.
Kremer JM, Gibofsky A, Greenberg JD. The role of drug and disease registries in rheumatic disease epidemiology. Curr Opin Rheumatol 2008; 20: 123-130.
6.
Gliklich RE, Dreyer NA (red). Registries for evaluating patient outcomes: A user’s guide – second edition. AHRQ Publication No. 10-EHC049, September 2010.
7.
Dyrektywa 95/46/WE Parlamentu Europejskiego i Rady WE: http://www.giodo.gov.pl/568/id... [dostęp: 18.08.2012].
8.
Ustawa z dnia 29 sierpnia 1997 r. o ochronie danych osobowych, Dz.U. 2002 r. Nr 101, poz. 926, ze zm., http://www.giodo.gov.pl/ 593/id_art/386/j/pl [dostęp: 18.08.2012].
9.
Ustawa z dnia 28 kwietnia 2011 r. o systemie informacji w ochronie zdrowia, Dz.U. 2011 nr 113, poz. 657, http://isap.sejm.gov.pl/Detail... [dostęp: 18.08.2012].
10.
Wytyczne w zakresie przygotowania dokumentacji niezbędnej w celu przeprowadzenia analizy potrzeb utworzenia rejestru medycznego www.csioz.gov.pl/file.php?s=YT8xNTk= [dostęp: 18.08.2012].
11.
Kremers HM. Methods to analyze real-world databases and registries. Bull NYU Hosp Jt Dis 2009; 67: 193-197.
12.
Zink A, Askling J, Dixon WG, et al. European biologicals registers: Methodology, selected results and perspectives. Ann Rheum Dis 2009; 68: 1240-1246.
13.
van Vollenhoven RF, Askling J. Rheumatoid arthritis registries in Sweden. Clin Exp Rheumatol 2005; 23 (5 Suppl 39): 195-200.
14.
Neovius M, Simard JF, Askling J. ARTIS Study Group. How large are the productivity losses in contemporary patients with RA, and how soon in relation to diagnosis do they develop? Ann Rheum Dis 2011; 70: 1010-1015.
15.
Neovius M, Simard JF, Askling J, ARTIS Study Group. Nationwide prevalence of rheumatoid arthritis and penetration of disease-modifying drugs in Sweden. Ann Rheum Dis 2011; 70: 624-629.
16.
Simard JF, Arkema EV, Sundström A, et al. Ten years with biologics: To whom do data on effectiveness and safety apply? Rheumatology (Oxford) 2011; 50: 204-213.
17.
Symmons DP, Barrett EM, Bankhead CR, et al. The incidence of rheumatoid arthritis in the United Kingdom: Results from the Norfolk Arthritis Register. Br J Rheumatol 1994; 33: 735-739.
18.
www.medicine.manchester.ac.uk/musculoskeletal/research/arc/clinicalepidemiology/outcomestudies/noar/ [dostęp: 18.08.2012].
19.
Symmons DP, Silman AJ. The Norfolk Arthritis Register (NOAR). Clin Exp Rheumatol 2003; 21 (5 Suppl 31): 94-99.
20.
Symmons DP, Silman AJ. Aspects of early arthritis. What determines the evolution of early undifferentiated arthritis and rheumatoid arthritis? An update from the Norfolk Arthritis Register. Arthritis Res Ther 2006; 8: 214.
21.
Silman A, Symmons D, Scott D, Griffiths I. British Society for Rheumatology Biologics Register. Ann Rheum Dis 2003; 62 (Suppl 2): ii28-ii29.
22.
Hyrich KL, Watson KD, Isenberg DA, Symmons DP; BSR Biologics Register. The British Society for Rheumatology Biologics Register: 6 years on. Rheumatology (Oxford) 2008; 47: 1441-1443.
23.
www.rheumatology.org.uk/bsr_biologics_register/what_is_bsrbr.aspx [dostęp: 18.08.2012].
25.
Furst DE, Pangan AL, Harrold LR, et al. Greater likelihood of remission in rheumatoid arthritis patients treated earlier in the disease course: Results from the Consortium of Rheumatology Researchers of North America registry. Arthritis Care Res (Hoboken) 2011; 63: 856-864.
27.
Żuber Ż, Rutkowska-Sak L, Postępski J i wsp. Długoterminowa ocena bezpieczeństwa i skuteczności leczenia biologicznego młodzieńczego idiopatycznego zapalenia stawów – prezentacja polskiego rejestru elektronicznego. Reumatologia 2011; 49: 10-15.
28.
Dixon WG, Carmona L, Finckh A, et al. EULAR points to consider when establishing, analysing and reporting safety data of biologics registers in rheumatology. Ann Rheum Dis 2010; 69: 1596-1602.
29.
Vandenbroucke JP, von Elm E, Altman DG, et al. Strengthening the Reporting of Observational Studies in Epidemiology (STROBE): Explanation and elaboration. PLoS Med 2007; 4: e297.
Copyright: © Narodowy Instytut Geriatrii, Reumatologii i Rehabilitacji w Warszawie. This is an Open Access journal, all articles are distributed under the terms of the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International (CC BY-NC-SA 4.0) License (https://creativecommons.org/licenses/by-nc-sa/4.0/), allowing third parties to copy and redistribute the material in any medium or format and to remix, transform, and build upon the material, provided the original work is properly cited and states its license.
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