Abstract.
Long-term, prospective databasing of multiple sclerosis (MS) information provides a useful resource for natural history studies. Furthermore, it is the only way to address the question of whether early treatment eliminates or delays the inevitable and irreversible clinical worsening that is the hallmark of the late phase of the illness. Due to the variable nature of MS, it is useful to monitor large numbers of individuals over time. The limitations of single databases may be overcome by regional, national or international pooling of data. In this paper, the Italian Multiple Sclerosis Database Network (MSDN) and the international web-based MSBase registry are described.
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References
Confavreux C, Compston DA, Hommes OR, McDonald WI, Thompson AJ (1992) EDMUS, a European database for multiple sclerosis. J Neurol Neurosurg Psychiatry 55:671–676
Koch-Henriksen N (1999) The Danish Multiple Sclerosis Registry: a 50-year follow-up. Mult Scler 5:293–296
Paty D, Studney D, Redekop K, Lublin F (1994) MS COSTAR: a computerized patient record adapted for clinical research purposes. Ann Neurol 36 (Suppl):S134–S135
Schroder M (1999) MUSIS 2.0—Multiple Sclerosis Information System: an easy-to-use-database to improve the care of patients with multiple sclerosis. Mult Scler 5:297–298
Millefiorini E, Gasperini C, Pozzilli C, D’Andrea F, Bastianello S, Trojano M, Morino S, Morra VB, Bozzao A, Calo’ A, Bernini ML, Gambi D, Prencipe M (1997) Randomized placebo-controlled trial of mitoxantrone in relapsing-remitting multiple sclerosis: 24-month clinical and MRI outcome. J Neurol 244:153–159
Trojano M, Avolio C, Manzari C, Calo A, De Robertis F, Serio G, Livrea P (1995) Multivariate analysis of predictive factors of multiple sclerosis course with a validated method to assess clinical events. J Neurol Neurosurg Psychiatry 58:300–306
Trojano M, Liguori M, Bosco Zimatore G, Bugarini R, Avolio C, Paolicelli D, Giuliani F, De Robertis F, Marrosu MG, Livrea P (2002) Age-related disability in multiple sclerosis. Ann Neurol 51:475–480
Trojano M, Liguori M, Paolicelli D, Bosco Zimatore G, De Robertis F, Avolio C, Giuliani F, Fuiani A, Livrea P and the Southern Italy MS Group Interferon-Beta in Relapsing-Remitting MS (2003) An independent postmarketing study in Southern Italy. Mult Scler 9:451–457
Butzkueven H, Chapman J, Cristiano E, Grand’Maison F, Izquierdo G, Kappos L, Leist T, Poehlau D, Rivera V, Trojano M, Verheul F on behalf of the MS Base Scientific Advisory Board (2003) MSBase: an international, online registry dedicated to evaluating outcomes data in multiple sclerosis. Mult Scler 9 (Suppl 1):S6–S42
Weinshenker BG (1999) Databases in MS research: pitfalls and promises. Mult Scler 5:206–211
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Trojano, M. Can databasing optimise patient care?. J Neurol 251 (Suppl 5), v79–v82 (2004). https://doi.org/10.1007/s00415-004-1513-x
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DOI: https://doi.org/10.1007/s00415-004-1513-x