TY - JOUR
T1 - Multidisciplinary data infrastructures in multiple sclerosis: Why they are needed and can be done!
AU - Peeters, Liesbet M.
AU - van Munster, Caspar E. P.
AU - van Wijmeersch, Bart
AU - Bruyndonckx, Robin
AU - Lamers, Ilse
AU - Hellings, Niels
AU - Popescu, Veronica
AU - Thalheim, Christoph
AU - Feys, Peter
PY - 2019/4/1
Y1 - 2019/4/1
N2 - 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.
AB - 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.
UR - https://www.scopus.com/inward/record.uri?partnerID=HzOxMe3b&scp=85060237738&origin=inward
UR - https://www.ncbi.nlm.nih.gov/pubmed/30381984
U2 - https://doi.org/10.1177/1352458518807076
DO - https://doi.org/10.1177/1352458518807076
M3 - Article
C2 - 30381984
SN - 1352-4585
VL - 25
SP - 500
EP - 509
JO - MULTIPLE SCLEROSIS JOURNAL
JF - MULTIPLE SCLEROSIS JOURNAL
IS - 4
ER -