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Journal of Neurology

, Volume 255, Supplement 6, pp 102–108 | Cite as

National MS registries

  • Peter FlacheneckerEmail author
  • Kristin Stuke
Article

Abstract

This review gives an overview of national registries that are currently in use for patients with multiple sclerosis (MS). The large-scale registries described herein include the Danish MS Registry, the Norwegian MS Registry, the Swedish MS Registry, the Italian MS Database Network, the North-American NARCOMS Registry, and the German MS Registry. These MS registries are extremely helpful for studying disease characteristics in large populations and monitoring the long-term outcome of disease-modifying therapies. Furthermore, an almost complete ascertainment of cases provides information on the provision of treatments, services and supplies within a given area that may be used to compare different levels of health care within and between these regions. In the long-term, MS registries monitor the health care situation of MS patients over time including the implementation of guidelines relating to care and treatment, measure the improvements that have taken place, and reveal shortages and/or misalignment in health care services. The information gathered herein is not only useful for the long-term follow-up of the individual patient, but also for society as a whole by increasing understanding of and knowledge about MS and allowing national authorities and relevant parties to make informed and relevant decisions about MS.

Key words

multiple sclerosis databases registries epidemiology 

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References

  1. 1.
    Bronnum-Hansen H, Hansen T, Koch-Henriksen N, Stenager E (2006) Fatalaccidents among Danes with multiplesclerosis. Mult Scler 12:329–332Google Scholar
  2. 2.
    Butzkueven H, Chapman J, Cristiano E,Grand’Maison F, Hoffmann M, IzquierdoG, Jolley D, Kappos L, Leist T,Pöhlau D, Rivera V, Trojano M, VerheulF, Malkowski JP (2006) MSBase: aninternational, online registry andplatform for collaborative outcomesresearch in multiple sclerosis. MultScler 12:769–774Google Scholar
  3. 3.
    Flachenecker P, Hartung HP (1996)EDMUS – eine europäische Datenbankfür multiple Sklerose. Eine kurze Vorstellungbereits laufender und nochgeplanter multizentrischer Studien imRahmen der “Europäischen konzertiertenAktion für multiple Sklerose”.Nervenarzt 67:277–282PubMedGoogle Scholar
  4. 4.
    Flachenecker P, Stuke K, Elias W,Freidel M, Haas J, Pitschnau-Michel D,Schimrigk S, Zettl UK, Rieckmann P(2008) Multiple-Sklerose-Register inDeutschland. Ausweitung des Projektes2005/2006. Dt Ärztebl 105:113–119Google Scholar
  5. 5.
    Flachenecker P, Zettl UK, Götze U,Haas J, Schimrigk S, Elias W, Pette M,Eulitz M, Hennig M, Bertram J, HollweckR, Neiss A, Daumer M, Pitschnau-Michel D, Rieckmann P (2005) MSRegister in Deutschland – Design underste Ergebnisse der Pilotphase.Nervenarzt 76:967–975PubMedCrossRefGoogle Scholar
  6. 6.
    Flachenecker P, Zettl UK, Götze U,Stuke K, Elias W, Eulitz M, Haas J, PetteM, Pitschnau-Michel D, Schimrigk S,Rieckmann P (2007) MS-Register inDeutschland: abschliessende Ergebnisseder Pilotphase. Neurol Rehabil13:193–200Google Scholar
  7. 7.
    Kobelt G, Berg J, Lindgren P, Jonsson B(2006) Costs and quality of life inmultiple sclerosis in Europe: methodof assessment and analysis. Eur JHealth Econ 7(Suppl 2):S5–S13CrossRefGoogle Scholar
  8. 8.
    Koch-Henriksen N, Hyllested K (1988)Epidemiology of multiple sclerosis:incidence and prevalence rates inDenmark 1948–64 based on the DanishMultiple Sclerosis Registry. Acta NeurolScand 78:369–380Google Scholar
  9. 9.
    Koch-Henriksen N, Rasmussen S,Stenager E, Madsen M (2001) TheDanish Multiple Sclerosis Registry.History, data collection and validity.Dan Med Bull 48:91–94PubMedGoogle Scholar
  10. 10.
    Landtblom AM, Stawiarz L, Ahlgren C,Andersen O, Callander M, Boström I,Severinson G, Hillert J (2007) TheNational Swedish MS Register detectsan unexpectedly high prevalence inSweden. Mult Scler 13(Suppl 2):104Google Scholar
  11. 11.
    Lo AC, Hadjimichael O, Vollmer TL(2005) Treatment patterns of multiplesclerosis patients: a comparison ofveterans and non-veterans using theNARCOMS registry. Mult Scler 11:33–40PubMedCrossRefGoogle Scholar
  12. 12.
    Marrie RA, Cutter G, Tyry T, CampagnoloD, Vollmer T (2007) Validation ofthe NARCOMS registry: diagnosis.Mult Scler 13:770–775PubMedCrossRefGoogle Scholar
  13. 13.
    Marrie RA, Cutter G, Tyry T, HadjimichaelO, Campagnolo D, Vollmer T(2005) Changes in the ascertainmentof multiple sclerosis. Neurology 65:1066–1070PubMedCrossRefGoogle Scholar
  14. 14.
    Multiple Sklerose Therapie KonsensusGruppe, Rieckmann P (2006) ImmunmodulatorischeStufentherapie derMultiplen Sklerose: Update September2006. Nervenarzt 77:1506–1518Google Scholar
  15. 15.
    Myhr KM, Grytten N, Aarseth JH,Nyland H (2006) The NorwegianMultiple Sclerosis National CompetenceCentre and National MultipleSclerosis registry – a resource for clinicalpractice and research. Acta NeurolScand (Suppl) 183:37–40Google Scholar
  16. 16.
    National Multiple Sclerosis Society(2008) Support establishing a nationalmultiple sclerosis registry. wwwnationalmssociety org/downloadaspx?id=1031Google Scholar
  17. 17.
    Schwartz CE, Vollmer T, Lee H (1999)Reliability and validity of two self-reportmeasures of impairment anddisability for MS. North AmericanResearch Consortium on MultipleSclerosis Outcomes Study Group.Neurology 52:63–70PubMedGoogle Scholar
  18. 18.
    Sorensen PS, Koch-Henriksen N,Ravnborg M, Frederiksen JL, Jensen K,Heltberg A, Schaldemose H, Deth S,Kristensen O, Worm M, Stenager E,Hansen HJ, Sivertsen B, Torring J(2006) Immunomodulatory treatmentof multiple sclerosis in denmark: aprospective nationwide survey. MultScler 12:253–264Google Scholar
  19. 19.
    Sorensen TL, Frederiksen JL,Bronnum-Hansen H, Petersen HC(1999) Optic neuritis as onset manifestationof multiple sclerosis: a nationwide,long-term survey. Neurology53:473–478PubMedGoogle Scholar
  20. 20.
    Stuke K, Flachenecker P, Zettl U, EliasW, Freidel M, Haas J, Pitschnau-MichelD, Schimrigk S, Rieckmann P (2008)MS Register in Germany: update 2007.J Neurol 255(Suppl 2):II81Google Scholar
  21. 21.
    Trojano M (2004) Can databasingoptimise patient care? J Neurol 251(Suppl 5):v79–v82PubMedCrossRefGoogle Scholar
  22. 22.
    Trojano M, Paolicelli D, Lepore V,Fuiani A, Di ME, Pellegrini F, Russo P,Livrea P, Comi G (2006) Italian MultipleSclerosis Database Network. NeurolSci 27(Suppl 5):S358–S361Google Scholar
  23. 23.
    Trojano M, Russo P, Fuiani A, PaolicelliD, Di ME, Granieri E, Rosati G, SavettieriG, Comi G, Livrea P (2006) TheItalian Multiple Sclerosis DatabaseNetwork (MSDN): the risk of worseningaccording to IFNbeta exposure inmultiple sclerosis. Mult Scler 12:578–585PubMedCrossRefGoogle Scholar
  24. 24.
    Weinshenker BG (1999) Databases inMS research: pitfalls and promises.Mult Scler 5:206–211PubMedGoogle Scholar
  25. 25.
    Wingerchuk DM, Noseworthy JH(2002) Randomized controlled trials toassess therapies for multiple sclerosis.Neurology 58(Suppl 4):S40–S48PubMedGoogle Scholar

Copyright information

© Steinkopff-Verlag 2008

Authors and Affiliations

  1. 1.Neurological Rehabilitation Center “Quellenhof”Bad WildbadGermany
  2. 2.MS-Forschungs- und Projektentwicklungs-gGmbHHannoverGermany

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