Databases in MS research: pitfalls and promises

Weinshenker, B. G.

doi:10.1191/135245899678846096

Cited by 10 publications

(12 citation statements)

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“…A key issue for this purpose is the careful selection of data that should be collected and that is adequately balanced between a limited amount of core data that it would be acceptable for respondents to provide, and the clinician's desire to collect almost all available information about their patients as in randomized controlled trials [17]. The methodology for the development of the questionnaires appeared sufficiently accurate to fulfil the requirements of broad data recording: the medical questionnaire was based on the minimal data set used in the German MS register that has been built up since 2003 and that currently includes nearly 20,000 patients from more than 100 centres throughout Germany [4][5][6]16].…”

Section: Discussionmentioning

confidence: 99%

Development and pilot phase of a European MS register

et al. 2010

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The MS-ID (Multiple Sclerosis Information Dividend) project was initiated by the European Multiple Sclerosis Platform (EMSP) in 2007 in order to identify and address major inequalities of MS treatment and care and thus eliminate disparities across the EU. One major approach to reach these goals in the longer term is the implementation of a European MS register for MS. The feasibility of an EU MS register was piloted among five countries (Germany, Iceland, Poland, Romania and Spain). Each country liaised with one documentation centre. Countries and test centres were both chosen in a way that a heterogeneous health care structure was provided. After reaching consensus about the data set, comprehension and acceptability of the two questionnaires-representing both the physician's and the patient's perspective-were tested with 20 MS patients in each country. In a 6-month data collection period, data from 547 patients were recorded. Most sections of the questionnaires were available for more than 90% of patients. The results obtained from the pilot phase of the European MS register indicate that it is feasible to collect standardized data across Europe. Thus, the European MS register may be a valuable instrument to compare treatment and care of MS across countries, estimate the cost of MS in Europe and monitor the implementation of and adherence to guidelines. It may help to reduce the disparities in MS care and treatment throughout Europe and eventually improve the quality of life of people with MS.

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Section: Discussionmentioning

confidence: 99%

Development and pilot phase of a European MS register

et al. 2010

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“…The benefits of databases and databasing in MS have already been widely recognised [10]. Databasing may help to optimise patient care by providing valuable natural history information in untreated patients and long-term information in treated patients additional to data from clinical trials.…”

Section: Discussionmentioning

confidence: 99%

Can databasing optimise patient care?

Trojano

2004

J Neurol

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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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“…Databases of clinical practice variables [7] may be useful in assessing long-term efficacy and data have recently become available from the long-term follow-up study of the pivotal IFN-β 1b trial [6]. Historic untreated cohorts can be used as control groups to assess the regression to the mean effect [13, 14].…”

Section: Discussionmentioning

confidence: 99%

“…Placebo-controlled studies are not now ethically justified, so observational studies and comparisons with historic cohorts can be used to produce safety, tolerability and long-term efficacy data [6,7,8,9]. …”

Section: Introductionmentioning

confidence: 99%

Interferon-β<sub>1b</sub> in Multiple Sclerosis: Effect on Progression of Disability and Clinical Markers of Treatment Response

Carmona

Casado²,

Moral³

et al. 2008

Eur Neurol

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There is limited long-term data on the effect of interferon-β_1b (IFN-β_1b) on disability progression in patients with multiple sclerosis (MS). There is also no reliable way of predicting individual responses to IFN-β_1b treatment. This prospective study investigated early clinical prognostic markers of disease activity and progression in 115 patients with relapsing-remitting MS (RRMS) treated with IFN-β_1b for almost 5 years. The study also compared progression of disability in IFN-β_1b-treated patients with a historic untreated cohort of MS patients (n = 44). The number of relapses in the first 2 years of MS and in the 2 years before treatment predicted an early relapse after IFN-β_1b treatment. The IFN-β_1b-treated group experienced a slower progression of disability than the untreated cohort, suggesting that IFN-β_1b treatment delays progression of disability in RRMS.

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Databases in MS research: pitfalls and promises

Cited by 10 publications

References 0 publications

Development and pilot phase of a European MS register

Development and pilot phase of a European MS register

Can databasing optimise patient care?

Interferon-β<sub>1b</sub> in Multiple Sclerosis: Effect on Progression of Disability and Clinical Markers of Treatment Response

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