Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2018 Apr;24(5):579-586.
doi: 10.1177/1352458517698250. Epub 2017 Mar 1.

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

Bruce F Bebo Jr  1 , Robert J Fox  2 , Karen Lee  3 , Ursula Utz  4 , Alan J Thompson  5
Affiliations

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

Bruce F Bebo Jr et al. Mult Scler. 2018 Apr.

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.

Keywords: Progressive MS; biospecimens; cohort study; data collection; patient-reported outcomes; registries.

PubMed Disclaimer

Conflict of interest statement

Declaration of Conflicting Interests: The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: AJT has received honoraria/support for travel for consultancy from Eisai, Optum Insight, and Excemed. He received support for travel from the International Progressive MS Alliance, as chair of their Scientific Steering Committee and the National MS Society (USA) as member of their Research Programs Advisory Committee. He is Editor-in-Chief of Multiple Sclerosis Journal. RJF has received personal consulting fees from Actelion, Biogen, Genentech, Mallinckrodt, MedDay, Novartis, and Teva; has served on advisory committees for Biogen Idec and Novartis; received research grant funding from NIH, National MS Society, and Novartis; and receives salary support to Cleveland Clinic for his role as Managing Director of the NARCOMS registry. BFB, UU and KL have no conflicts to declare.

References

    1. Hurwitz BJ. Registry studies of long-term multiple sclerosis outcomes: Description of key registries. Neurology 2011; 76(1 Suppl. 1): S3–S6. - PubMed
    1. Massa J, O’Reilly EJ, Munger KL, et al. Caffeine and alcohol intakes have no association with risk of multiple sclerosis. Mult Scler 2013; 19(1): 53–58. - PMC - PubMed
    1. Pfleger CC, Koch-Henriksen N, Stenager E, et al. Head injury is not a risk factor for multiple sclerosis: A prospective cohort study. Mult Scler 2009; 15(3): 294–298. - PubMed
    1. Tantsis EM, Prelog K, Brilot F, et al. Risk of multiple sclerosis after a first demyelinating syndrome in an Australian Paediatric cohort: Clinical, radiological features and application of the McDonald 2010 MRI criteria. Mult Scler 2013; 19(13): 1749–1759. - PubMed
    1. Cocco E, Sardu C, Spinicci G, et al. Influence of treatments in multiple sclerosis disability: A cohort study. Mult Scler 2015; 21(4): 433–441. - PubMed

LinkOut - more resources