Multidisciplinary data infrastructures in multiple sclerosis: Why they are needed and can be done!. (April 2019)

• Record Type: Journal Article
• Authors: Peeters, Liesbet M; van Munster, Caspar EP; Van Wijmeersch, Bart; Bruyndonckx, Robin; Lamers, Ilse; Hellings, Niels; Popescu, Veronica; Thalheim, Christoph; Feys, Peter
• Is Part Of: Multiple sclerosis. Volume 25:Number 4(2019)
• Page Start: 500
• Page End: 509
• Publication Date: 2019-04
• Subjects: Individualized medicine -- data management -- multidisciplinary treatment -- multiple sclerosis; Central nervous system -- Diseases -- Periodicals; Myelin sheath -- Diseases -- Periodicals; Inflammation -- Periodicals; Multiple sclerosis -- Periodicals; Central Nervous System Diseases -- Periodicals; Demyelinating Diseases -- Periodicals; Inflammation -- Periodicals; Multiple Sclerosis -- Periodicals; Système nerveux central -- Maladies -- Périodiques; Gaine de myéline -- Maladies -- Périodiques; Inflammation (Pathologie) -- Périodiques; Sclérose en plaques -- Périodiques; Electronic journals; 616.834005
• DOI: 10.1177/1352458518807076
• Languages: English
• ISSNs: 1352-4585

Abstract

Personalized treatment is highly desirable in multiple sclerosis (MS). We believe that multidisciplinary measurements including clinical, functional and patient-reported outcome measures in combination with extensive patient profiling can enhance personalized treatment and rehabilitation strategies. We elaborate on four reasons behind this statement: (1) MS disease activity and progression are complex and multidimensional concepts in nature and thereby defy a one-size-fits-all description, (2) functioning, progression, treatment, and rehabilitation effects are interdependent and should be investigated together, (3) personalized healthcare is based on the dynamics of system biology and on technology that confirms a patient's fundamental biology and (4) inclusion of patient-reported outcome measures can facilitate patient-relevant healthcare. We discuss currently available multidisciplinary MS data initiatives and introduce joint actions to further increase the overall success. With this topical review, we hope to drive the MS community to invest in expanding towards more multidisciplinary and longitudinal data collection.