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Big Multiple Sclerosis Data network: data sharing among five large MS registries
ECTRIMS Online Library. Iaffaldano P.
Oct 26, 2017; 200393
Pietro Iaffaldano
Pietro Iaffaldano
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Abstract
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Abstract: P738

Type: Poster

Abstract Category: Therapy - disease modifying - 28 Long-term treatment monitoring

Background: There is a large unmet need in areas of MS research requiring big data which single country or even international registries lack the sample size and power to address. MSBase, OFSEP of France, and the Danish, Italian and Swedish national MS registries merged data for specific projects in the Big Multiple Sclerosis Data (BMSD) Network.
Objectives: To describe the data structure, procedures for data sharing and feasibility of an initial demonstrator project in the BMSD network.
Methods: A feasibility phase of the study has been performed to evaluate differences and commonalities among the five registries. Data counts of the minimum dataset variables needed to describe the disease course of an typical MS patient have been performed and compared among sources. A standardization of definitions and procedures have been performed to ensure the possibility to merge data from different sources. Data counts to evaluate capacity to perform a demonstrator project, namely longitudinal treatment efficacy evaluation in Relapsing-Remitting MS (RRMS) patients followed for more than 10 years have been performed.
Results: The BMSD merged dataset has collected longitudinal data on 138,148 MS patients. A total of 143,345 disease modifying drug (DMD) treatment episodes were available. At least 1 DMD treatment episode was available in 73,820 MS patients. An EDSS evaluation at both the treatment start and stop dates was available in 67,009 MS patients. A total of 23,336 RRMS patients with ≥ 10 years follow-up and at least 3 EDSS evaluations were retrieved. Of these, 19,283 received ≥ 1 DMD prescription during the follow-up, whereas 4,053 were completely untreated. For this cohort of RRMS patients a total 480,565 EDSS evaluations were available.
Conclusions: The BMSD network will allow pooling of MS data at a scale that raises MS research to a new level, with the ultimate aim to lessen in the future the burden of the disease for MS patients. BMSD will overcome major unmet scientific needs in MS requiring large long-term longitudinal data.
Disclosure: Pietro Iaffaldano has served on scientific advisory boards for Biogen Idec and Novartis, and has received funding for travel and/or speaker honoraria from Genzyme, Biogen Idec, Merck-serono, Teva and Novartis.
Helmut Butzkueven reports Research support from Biogen, Novartis, Merck. Advisory Board and Speaker fees from Roche, Biogen, Novartis, Merck, Teva, Medscape, Oxford Pharmagenesis
Jan Hillert has received honoraria for serving on advisory boards for Biogen, Sanofi-Genzyme and Novartis and speaker's fees from Biogen, Novartis, Merck-Serono, Bayer-Schering, Teva and Sanofi-Genzyme. He has served as P.I. for projects, or received unrestricted research support from, BiogenIdec, Merck-Serono, TEVA, Sanofi-Genzyme and Bayer-Schering. His MS research is funded by the Swedish Research Council and the Swedish Brain foundation.
Robert Hyde is employed by Biogen and holds stock in Biogen.
Melinda Magyari has served on scientific advisory board for Biogen Idec and Novartis, Merck, Sanofi, has received honoraria for lecturing from Biogen Idec, Merck, Novartis, Genzyme, has received support for congress participation from Biogen Idec, Novartis, Genzyme, Teva.
Maria Trojano has received honoraria for consultancy or speaking from Biogen, Sanofi-Aventis, Merck Serono and Bayer-Schering and research grants from Merck Serono, Biogen and Novartis.
Sandra Vukusic has received consultancy fees, speaker fees, research grants (non-personal) or honoraria from Biogen, Geneuro, Genzyme-Sanofi, Medday, Merck-Serono, Novartis, Roche and Teva.
Tim Spelman received honoraria for consultancy, funding for travel and compensation for serving on scientific advisory boards from Biogen Idec Inc; speaker honoraria from Novartis.
BMSD network was supported by an unrestricted grant from Biogen Idec.

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