Literature DB >> 33452493

Standardization and digitization of clinical data in multiple sclerosis.

Marcus D'Souza1,2,3, Athina Papadopoulou4,5, Christophe Girardey6, Ludwig Kappos4,5.   

Abstract

Standardization is necessary to ensure the reliability of clinical data and to enable longitudinal and cross-sectional comparisons of data obtained in different centres and countries. In patients with multiple sclerosis (MS), standardized clinical data are needed for monitoring of disability and for collecting real-world evidence for use in research. This Perspective describes attempts to improve the standardization and digitization of clinical data in MS, including digital electronic health recording systems and applications that attempt to offer a comprehensive assessment of patients' neurological deficits and their effects on daily life. Despite the challenges raised by regulatory, ethical and data-privacy considerations, the standardization and digitization of clinical data in MS is expected to generate new insights into the pathophysiology of the disease and to contribute to personalized patient care.

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Year:  2021        PMID: 33452493     DOI: 10.1038/s41582-020-00448-7

Source DB:  PubMed          Journal:  Nat Rev Neurol        ISSN: 1759-4758            Impact factor:   42.937


  49 in total

1.  On the origin of Neurostatus.

Authors:  Ludwig Kappos; Marcus D'Souza; Jeannette Lechner-Scott; Carmen Lienert
Journal:  Mult Scler Relat Disord       Date:  2015-04-11       Impact factor: 4.339

Review 2.  Unraveling treatment response in multiple sclerosis: A clinical and MRI challenge.

Authors:  Claudio Gasperini; Luca Prosperini; Mar Tintoré; Maria Pia Sormani; Massimo Filippi; Jordi Rio; Jacqueline Palace; Maria A Rocca; Olga Ciccarelli; Frederik Barkhof; Jaume Sastre-Garriga; Hugo Vrenken; Jette L Frederiksen; Tarek A Yousry; Christian Enzinger; Alex Rovira; Ludwig Kappos; Carlo Pozzilli; Xavier Montalban; Nicola De Stefano
Journal:  Neurology       Date:  2018-12-26       Impact factor: 9.910

Review 3.  Multiple sclerosis.

Authors:  Alan J Thompson; Sergio E Baranzini; Jeroen Geurts; Bernhard Hemmer; Olga Ciccarelli
Journal:  Lancet       Date:  2018-03-23       Impact factor: 79.321

Review 4.  Progressive multiple sclerosis: from pathogenic mechanisms to treatment.

Authors:  Jorge Correale; María I Gaitán; María C Ysrraelit; Marcela P Fiol
Journal:  Brain       Date:  2017-03-01       Impact factor: 13.501

Review 5.  Assessing treatment outcomes in multiple sclerosis trials and in the clinical setting.

Authors:  Carmen Tur; Marcello Moccia; Frederik Barkhof; Jeremy Chataway; Jaume Sastre-Garriga; Alan J Thompson; Olga Ciccarelli
Journal:  Nat Rev Neurol       Date:  2018-01-12       Impact factor: 42.937

Review 6.  Neurofilaments as biomarkers in neurological disorders.

Authors:  Michael Khalil; Charlotte E Teunissen; Markus Otto; Fredrik Piehl; Maria Pia Sormani; Thomas Gattringer; Christian Barro; Ludwig Kappos; Manuel Comabella; Franz Fazekas; Axel Petzold; Kaj Blennow; Henrik Zetterberg; Jens Kuhle
Journal:  Nat Rev Neurol       Date:  2018-10       Impact factor: 42.937

Review 7.  Multidisciplinary data infrastructures in multiple sclerosis: Why they are needed and can be done!

Authors:  Liesbet M Peeters; Caspar Ep van Munster; Bart Van Wijmeersch; Robin Bruyndonckx; Ilse Lamers; Niels Hellings; Veronica Popescu; Christoph Thalheim; Peter Feys
Journal:  Mult Scler       Date:  2018-11-01       Impact factor: 6.312

8.  Clinical data interchange standards consortium: A bridge to overcome data standardisation.

Authors:  Deven Kishor Babre
Journal:  Perspect Clin Res       Date:  2013-04

9.  Defining the clinical course of multiple sclerosis: the 2013 revisions.

Authors:  Fred D Lublin; Stephen C Reingold; Jeffrey A Cohen; Gary R Cutter; Per Soelberg Sørensen; Alan J Thompson; Jerry S Wolinsky; Laura J Balcer; Brenda Banwell; Frederik Barkhof; Bruce Bebo; Peter A Calabresi; Michel Clanet; Giancarlo Comi; Robert J Fox; Mark S Freedman; Andrew D Goodman; Matilde Inglese; Ludwig Kappos; Bernd C Kieseier; John A Lincoln; Catherine Lubetzki; Aaron E Miller; Xavier Montalban; Paul W O'Connor; John Petkau; Carlo Pozzilli; Richard A Rudick; Maria Pia Sormani; Olaf Stüve; Emmanuelle Waubant; Chris H Polman
Journal:  Neurology       Date:  2014-05-28       Impact factor: 9.910

Review 10.  MAGNIMS consensus recommendations on the use of brain and spinal cord atrophy measures in clinical practice.

Authors:  Jaume Sastre-Garriga; Deborah Pareto; Marco Battaglini; Maria A Rocca; Olga Ciccarelli; Christian Enzinger; Jens Wuerfel; Maria P Sormani; Frederik Barkhof; Tarek A Yousry; Nicola De Stefano; Mar Tintoré; Massimo Filippi; Claudio Gasperini; Ludwig Kappos; Jordi Río; Jette Frederiksen; Jackie Palace; Hugo Vrenken; Xavier Montalban; Àlex Rovira
Journal:  Nat Rev Neurol       Date:  2020-02-24       Impact factor: 42.937

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  1 in total

1.  Practice Effects of Mobile Tests of Cognition, Dexterity, and Mobility on Patients With Multiple Sclerosis: Data Analysis of a Smartphone-Based Observational Study.

Authors:  Tim Woelfle; Silvan Pless; Andrea Wiencierz; Ludwig Kappos; Yvonne Naegelin; Johannes Lorscheider
Journal:  J Med Internet Res       Date:  2021-11-18       Impact factor: 5.428

  1 in total

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