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Landscape of MS patient cohorts and registries: recommendations for maximizing impact

Bebo, B; Fox, RJ; Lee, K; Utz, U; Thompson, AJ; (2017) Landscape of MS patient cohorts and registries: recommendations for maximizing impact. Multiple Sclerosis Journal 10.1177/1352458517698250. (In press). Green open access

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Abstract

BACKGROUND: There is a growing number of cohorts and registries collecting phenotypic and genotypic data from groups of multiple sclerosis patients. Improved awareness and better coordination of these efforts is needed. OBJECTIVE: The purpose of this report is to provide a global landscape of the major longitudinal MS patient data collection efforts and share recommendations for increasing their impact. METHODS: A workshop that included over 50 MS research and clinical experts from both academia and industry was convened to evaluate how current and future MS cohorts could be better used to provide answers to urgent questions about progressive MS. RESULTS: The landscape analysis revealed a significant number of largely uncoordinated parallel studies. Strategic oversight and direction is needed to streamline and leverage existing and future efforts. A number of recommendations for enhancing these efforts were developed. CONCLUSIONS: Better coordination, increased leverage of evolving technology, cohort designs that focus on the most important unanswered questions, improved access, and more sustained funding will be needed to close the gaps in our understanding of progressive MS and accelerate the development of effective therapies.

Type: Article
Title: Landscape of MS patient cohorts and registries: recommendations for maximizing impact
Open access status: An open access version is available from UCL Discovery
DOI: 10.1177/1352458517698250
Publisher version: http://dx.doi.org/10.1177/1352458517698250
Language: English
Additional information: Copyright © The Author(s) 2017. This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 3.0 License (http://www.creativecommons.org/licenses/by-nc/3.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
Keywords: Progressive MS, cohort study, registries, data collection, patient-reported outcomes, biospecimens
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
URI: https://discovery.ucl.ac.uk/id/eprint/1546087
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