Register of multiple sclerosis patients Review article
Article Sidebar
Published:
Mar 31, 2014
Keywords:
multiple sclerosis, epidemiology, patients registry
Main Article Content
Abstract
Multiple sclerosis is a progressive, inflammatory demyelinating disease of the central nervous system, of an unknown aetiology. It predominantly affects younger people. It is estimated that about 40 000–45 000 people in Poland suffer from multiple sclerosis, with 1100–1700 new patients being diagnosed annually. Those rates are based solely on statistics provided by National Health Fund and do not include various essential information, e.g. about course and form of the disease, degree of disability, type of treatment or data on patients’ quality of life. In most European countries this information is being gathered by national registers of patients, which have often operated for many years. Poland is an unique exception and the biggest country with so many patients and no systematic register. In order to evaluate basic epidemiological parameters it is a need of creating, in imitation of many other countries, a National Register of MS Patients which would concentrate all assets concerning MS around this project. The article presented the most important of European databases and explained the basis of the Polish Register of MS Patients, which has been functioning since 2012.
Article Details
Issue
Section
Articles
Copyright © by Medical Education. All rights reserved.
References
1. Wender M., Liberski P.P.: Neuropatologia. W: Stwardnienie rozsiane. J. Losy (red.). Wydawnictwo Czelej, Lublin 2013: 29-43.
2. Atlas of MS 2013. Multiple Sclerosis International Federation, London 2013.
3. Potemkowski A.: Stwardnienie rozsiane w świecie i w Polsce – ocena epidemiologiczna. Aktualn. Neurol. 2009; 9: 91-97.
4. Wender M., Kowal P., Pruchnik-Grabowska D. et al.: Epidemiologia stwardnienia rozsianego na terenie Wielkopolski. Przegl. Epidemiol. 1986; 40: 387-397.
5. Wender M., Pruchnik-Grabowska D., Hertmanowska H. et al.: Zapadalność na stwardnienie rozsiane na terenie kilku województw zachodniej Polski. Zdrowie Publiczne 1994; 95: 531-536.
6. Fryze W., Obiedziński R.: Występowanie stwardnienia rozsianego wśród mieszkańców miasta Tczew położonego na północy Polski. Neurol. Neurochir. Pol. 1996; supl. 3: 77.
7. Potemkowski A.: Analiza epidemiologiczna stwardnienia rozsianego w województwie szczecińskim: ocena zachorowalności i chorobowości w latach 1993–1995. Neurol. Neurochir. Pol. 1999; 3: 575-85.
8. Potemkowski A., Stankiewicz J., Brzozowski S. et al.: Analiza epidemiologiczna stwardnienia rozsianego w regionie Szczecina w latach 1960–2004. Neurol. Neurochir. Pol. 2005; 39(supl. 2): 301-302.
9. Łobińska A., Stelmasiak Z.: Wybrane epidemiologiczne aspekty stwardnienia rozsianego w populacji miasta Lublina. Neurol. Neurochir. Pol. 2004; 38: 361-366.
10. Kułakowska A., Bartosik-Psujek H., Hożejowski R. et al.: Selected aspects of the epidemiology of multiple sclerosis in Poland – a multicentre pilot study. Neur. Neurochir. Pol. 2010; 44: 443-452.
11. Flaschenecker P., Buckow K., Pugliatti M.: Multiple sclerosis registries in Europe – results of a systematic survey. Poster presentation at the 29th Congress of the European Committee for Treatment and Research in Multiple Sclerosis, 3 October 2013, Copenhagen, Denmark.
12. European MS Platform [online: www.ms-in-europe.com].
13. Flachenecker P., Khil L., Bergmann S. et al.: Development and pilot phase of a European MS register. J. Neurol. 2010; 257: 1620-7.
14. Making EUReMS count for people with multiple sclerosis. Lancet Neurol. 2011; 10: 865.
15. Koch-Henriksen N., Hyllested K.: Epidemiology of multiple sclerosis: incidence and prevalence rates in Denmark 1948–64 based on the Danish Multiple Sclerosis Registry. Acta Neurol. Scand. 1988; 78: 369-380.
16. Koch-Henriksen N.: The Danish Multiple Sclerosis Registry: a 50-year follow-up. Mult. Scler. 1999; 5: 293-296.
17. Koch-Henriksen N., Stenager E., Brønnum-Hansen H.: Studies based on the Danish Multiple Sclerosis Registry. Scand. J. Public Health 2011; 39(7 suppl.): 180-184.
18. Myhr K.M., Grytten N., Aarseth J.H., Nyland H.: The Norwegian Multiple Sclerosis National Competence Centre and National Multiple Sclerosis registry – a resource for clinical practice and research. Acta Neurol. Scand. 2006; 183(suppl.): 37-40.
19. Ahlgren C., Odén A., Lycke J.: High nationwide prevalence of multiple sclerosis in Sweden. Mult. Scler. 2011; 17: 901-8.
20. Trojano M., Paolicelli D., Lepore V. et al.: Italian Multiple Sclerosis Database Network. Neurol. Sci. 2006; 27 (suppl. 5): S358-61.
21. Flachenecker P., Zettl U.K., Gotze U. et al.: MS-Register in Deutschland: abschliessende Ergebnisse der Pilotphase. Neurol. Rehabil. 2007; 13: 193-200.
22. Stuke K., Flachenecker P., Zettl U.K. et al.: Symptomatology of MS: results from the German MS Registry. J. Neurol. 2009; 256: 1932-5.
23. Ford D.V., Jones K.H., Middleton R.M. et al.: The feasibility of collecting information from people with Multiple Sclerosis for the UK MS Register via a web portal: characterising a cohort of people with MS. BMC Med. Inform. Decis. Mak. 2012; 12: 73-80.
24. [online: http://www.ukmsregister.org].
25. Hurwitz B.J.: Analysis of current multiple sclerosis registries. Neurology 2011; 76(1 Suppl. 1): 7-13.
26. Hurwitz B.J.: Registry studies of long-term multiple sclerosis outcomes: description of key registries. Neurology 2011; 76(1 Suppl. 1): 3-6.
27. Studney D., Lublin F., Marcucci L. et al.: MS COSTAR: a computerized record for use in clinical research in multiple sclerosis. J. Neuro. Rehab. 1993; 7: 145--152.
28. Marrie R.A., Cutter G., Tyry T. et al.: Validation of the NARCOMS registry: diagnosis. Mult. Scler. 2007; 13: 770-775.
29. [online: http://www.narcoms.org].
30. Jacobs L.D., Wende K.E., Brownscheidle C.M. et al.: A profile of multiple sclerosis: the New York State Multiple Sclerosis Consortium. Mult. Scler. 1999; 5(5): 369-76.
31. Confavreux C.: Establishment and use of multiple sclerosis registers – EDMUS. Ann. Neurol. 1994; 36(Suppl.): S136-S139.
32. Butzkueven H., Chapman J., Cristiano E. et al.: MSBase: an international, online registry and platform for collaborative outcomes research in multiple sclerosis. Mult. Scler. 2006; 12: 769-774.
33. Making EUReMS count for people with multiple sclerosis. Lancet Neurol. 2011; 10: 865.
2. Atlas of MS 2013. Multiple Sclerosis International Federation, London 2013.
3. Potemkowski A.: Stwardnienie rozsiane w świecie i w Polsce – ocena epidemiologiczna. Aktualn. Neurol. 2009; 9: 91-97.
4. Wender M., Kowal P., Pruchnik-Grabowska D. et al.: Epidemiologia stwardnienia rozsianego na terenie Wielkopolski. Przegl. Epidemiol. 1986; 40: 387-397.
5. Wender M., Pruchnik-Grabowska D., Hertmanowska H. et al.: Zapadalność na stwardnienie rozsiane na terenie kilku województw zachodniej Polski. Zdrowie Publiczne 1994; 95: 531-536.
6. Fryze W., Obiedziński R.: Występowanie stwardnienia rozsianego wśród mieszkańców miasta Tczew położonego na północy Polski. Neurol. Neurochir. Pol. 1996; supl. 3: 77.
7. Potemkowski A.: Analiza epidemiologiczna stwardnienia rozsianego w województwie szczecińskim: ocena zachorowalności i chorobowości w latach 1993–1995. Neurol. Neurochir. Pol. 1999; 3: 575-85.
8. Potemkowski A., Stankiewicz J., Brzozowski S. et al.: Analiza epidemiologiczna stwardnienia rozsianego w regionie Szczecina w latach 1960–2004. Neurol. Neurochir. Pol. 2005; 39(supl. 2): 301-302.
9. Łobińska A., Stelmasiak Z.: Wybrane epidemiologiczne aspekty stwardnienia rozsianego w populacji miasta Lublina. Neurol. Neurochir. Pol. 2004; 38: 361-366.
10. Kułakowska A., Bartosik-Psujek H., Hożejowski R. et al.: Selected aspects of the epidemiology of multiple sclerosis in Poland – a multicentre pilot study. Neur. Neurochir. Pol. 2010; 44: 443-452.
11. Flaschenecker P., Buckow K., Pugliatti M.: Multiple sclerosis registries in Europe – results of a systematic survey. Poster presentation at the 29th Congress of the European Committee for Treatment and Research in Multiple Sclerosis, 3 October 2013, Copenhagen, Denmark.
12. European MS Platform [online: www.ms-in-europe.com].
13. Flachenecker P., Khil L., Bergmann S. et al.: Development and pilot phase of a European MS register. J. Neurol. 2010; 257: 1620-7.
14. Making EUReMS count for people with multiple sclerosis. Lancet Neurol. 2011; 10: 865.
15. Koch-Henriksen N., Hyllested K.: Epidemiology of multiple sclerosis: incidence and prevalence rates in Denmark 1948–64 based on the Danish Multiple Sclerosis Registry. Acta Neurol. Scand. 1988; 78: 369-380.
16. Koch-Henriksen N.: The Danish Multiple Sclerosis Registry: a 50-year follow-up. Mult. Scler. 1999; 5: 293-296.
17. Koch-Henriksen N., Stenager E., Brønnum-Hansen H.: Studies based on the Danish Multiple Sclerosis Registry. Scand. J. Public Health 2011; 39(7 suppl.): 180-184.
18. Myhr K.M., Grytten N., Aarseth J.H., Nyland H.: The Norwegian Multiple Sclerosis National Competence Centre and National Multiple Sclerosis registry – a resource for clinical practice and research. Acta Neurol. Scand. 2006; 183(suppl.): 37-40.
19. Ahlgren C., Odén A., Lycke J.: High nationwide prevalence of multiple sclerosis in Sweden. Mult. Scler. 2011; 17: 901-8.
20. Trojano M., Paolicelli D., Lepore V. et al.: Italian Multiple Sclerosis Database Network. Neurol. Sci. 2006; 27 (suppl. 5): S358-61.
21. Flachenecker P., Zettl U.K., Gotze U. et al.: MS-Register in Deutschland: abschliessende Ergebnisse der Pilotphase. Neurol. Rehabil. 2007; 13: 193-200.
22. Stuke K., Flachenecker P., Zettl U.K. et al.: Symptomatology of MS: results from the German MS Registry. J. Neurol. 2009; 256: 1932-5.
23. Ford D.V., Jones K.H., Middleton R.M. et al.: The feasibility of collecting information from people with Multiple Sclerosis for the UK MS Register via a web portal: characterising a cohort of people with MS. BMC Med. Inform. Decis. Mak. 2012; 12: 73-80.
24. [online: http://www.ukmsregister.org].
25. Hurwitz B.J.: Analysis of current multiple sclerosis registries. Neurology 2011; 76(1 Suppl. 1): 7-13.
26. Hurwitz B.J.: Registry studies of long-term multiple sclerosis outcomes: description of key registries. Neurology 2011; 76(1 Suppl. 1): 3-6.
27. Studney D., Lublin F., Marcucci L. et al.: MS COSTAR: a computerized record for use in clinical research in multiple sclerosis. J. Neuro. Rehab. 1993; 7: 145--152.
28. Marrie R.A., Cutter G., Tyry T. et al.: Validation of the NARCOMS registry: diagnosis. Mult. Scler. 2007; 13: 770-775.
29. [online: http://www.narcoms.org].
30. Jacobs L.D., Wende K.E., Brownscheidle C.M. et al.: A profile of multiple sclerosis: the New York State Multiple Sclerosis Consortium. Mult. Scler. 1999; 5(5): 369-76.
31. Confavreux C.: Establishment and use of multiple sclerosis registers – EDMUS. Ann. Neurol. 1994; 36(Suppl.): S136-S139.
32. Butzkueven H., Chapman J., Cristiano E. et al.: MSBase: an international, online registry and platform for collaborative outcomes research in multiple sclerosis. Mult. Scler. 2006; 12: 769-774.
33. Making EUReMS count for people with multiple sclerosis. Lancet Neurol. 2011; 10: 865.