title: Landscape of MS patient cohorts and registries: Recommendations for maximizing impact.
abstract: 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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: National Multiple Sclerosis Society, New York, NY, USA.
authors.forename: Bruce F
authors.initials: BF
authors.lastname: Bebo
authors.affiliation: Mellen Center for Multiple Sclerosis, Cleveland Clinic, Cleveland, OH, USA.
authors.forename: Robert J
authors.initials: RJ
authors.lastname: Fox
authors.affiliation: Multiple Sclerosis Society of Canada, Toronto, ON, Canada.
authors.forename: Karen
authors.initials: K
authors.lastname: Lee
authors.affiliation: Division of Extramural Research, National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health, Bethesda, MD, USA.
authors.forename: Ursula
authors.initials: U
authors.lastname: Utz
authors.affiliation: Institute of Neurology, Faculty of Brain Sciences, University College London, London, UK.
authors.forename: Alan J
authors.initials: AJ
authors.lastname: Thompson
mesh_terms: D002202:Capital Financing; D015331:Cohort Studies; D003245:Consensus Statements as Topic; D018450:Disease Progression; D057286:Electronic Health Records; D005838:Genotype; D017408:Guidelines as Topic; D006801:Humans; D056747:Immunomodulation; D009103:Multiple Sclerosis / Q000191:economics / Q000453:epidemiology* / Q000235:genetics / Q000628:therapy*; D010641:Phenotype; D015995:Prevalence; D012042:Registries / Q000592:standards*; D012106:Research; D016896:Treatment Outcome
keywords: Progressive MS; biospecimens; cohort study; data collection; patient-reported outcomes; registries