Measuring Parkinson's disease over time: The real‐world within‐subject reliability of the MDS‐UPDRS

An important challenge in Parkinson's disease research is how to measure disease progression, ideally at the individual patient level. The MDS‐UPDRS, a clinical assessment of motor and nonmotor impairments, is widely used in longitudinal studies. However, its ability to assess within‐subject changes is not well known. The objective of this study was to estimate the reliability of the MDS‐UPDRS when used to measure within‐subject changes in disease progression under real‐world conditions.

[1]  M. Parmar,et al.  Is It Possible to Conduct a Multi-Arm Multi-Stage Platform Trial in Parkinson’s Disease: Lessons Learned from Other Neurodegenerative Disorders and Cancer , 2020, Journal of Parkinson's disease.

[2]  J. Jankovic,et al.  Movement Disorder Society‐sponsored revision of the Unified Parkinson's Disease Rating Scale (MDS‐UPDRS): Scale presentation and clinimetric testing results , 2008, Movement disorders : official journal of the Movement Disorder Society.

[3]  B. Bloem,et al.  Quadruple Decision Making for Parkinson’s Disease Patients: Combining Expert Opinion, Patient Preferences, Scientific Evidence, and Big Data Approaches to Reach Precision Medicine , 2019, Journal of Parkinson's disease.

[4]  C. Terwee,et al.  Linking measurement error to minimal important change of patient-reported outcomes. , 2009, Journal of clinical epidemiology.

[5]  C. Mazzà,et al.  Free‐living monitoring of Parkinson's disease: Lessons from the field , 2016, Movement disorders : official journal of the Movement Disorder Society.

[6]  Kamiar Aminian,et al.  The instrumented timed up and go test: potential outcome measure for disease modifying therapies in Parkinson's disease , 2009, Journal of Neurology, Neurosurgery & Psychiatry.

[7]  K. Marder,et al.  Progression of parkinsonian signs in Parkinson disease. , 1999, Archives of neurology.

[8]  J. Nutt,et al.  Short‐ and long‐duration responses to levodopa during the first year of levodopa therapy , 1997, Annals of neurology.

[9]  J. Marler,et al.  Neuroprotection trials in Parkinson's disease: Systematic review , 2009, Movement disorders : official journal of the Movement Disorder Society.

[10]  D. Berg,et al.  Global, Yet Incomplete Overview of Cohort Studies in Parkinson's disease. , 2017, Journal of Parkinson's disease.

[11]  Serge H. Roy,et al.  Dynamical Learning and Tracking of Tremor and Dyskinesia From Wearable Sensors , 2014, IEEE Transactions on Neural Systems and Rehabilitation Engineering.

[12]  T. Foltynie,et al.  The ongoing pursuit of neuroprotective therapies in Parkinson disease , 2015, Nature Reviews Neurology.

[13]  M. R. Novick.  The axioms and principal results of classical test theory , 1965 .

[14]  Andreu Català,et al.  Estimating bradykinesia severity in Parkinson's disease by analysing gait through a waist-worn sensor , 2017, Comput. Biol. Medicine.

[15]  Charles S. Bos,et al.  State Space Models With a Common Stochastic Variance , 2004 .

[16]  Giovanni Petris,et al.  An R Package for Dynamic Linear Models , 2010 .

[17]  G. Stebbins,et al.  Expanded and independent validation of the Movement Disorder Society–Unified Parkinson’s Disease Rating Scale (MDS-UPDRS) , 2012, Journal of Neurology.

[18]  Alan Godfrey,et al.  Validation of an Accelerometer to Quantify a Comprehensive Battery of Gait Characteristics in Healthy Older Adults and Parkinson's Disease: Toward Clinical and at Home Use , 2016, IEEE Journal of Biomedical and Health Informatics.

[19]  A. Singleton,et al.  The Parkinson Progression Marker Initiative (PPMI) , 2011, Progress in Neurobiology.

[20]  B. Hayete,et al.  Large-scale identification of clinical and genetic predictors of Parkinson’s disease motor progression in newly-diagnosed patients: a longitudinal cohort study and validation , 2017, The Lancet Neurology.

[21]  A. Lang,et al.  Pharmacological treatment of Parkinson disease: a review. , 2014, JAMA.

[22]  J. Rejas,et al.  Standard error of measurement as a valid alternative to minimally important difference for evaluating the magnitude of changes in patient-reported outcomes measures. , 2008, Journal of clinical epidemiology.

[23]  G. Stebbins,et al.  Differential progression of motor impairment in levodopa‐treated Parkinson's disease , 2000, Movement disorders : official journal of the Movement Disorder Society.

[24]  Max A. Little,et al.  Technology in Parkinson's disease: Challenges and opportunities , 2016, Movement disorders : official journal of the Movement Disorder Society.

[25]  Lynn Rochester,et al.  Progression of gait dysfunction in incident Parkinson's disease: Impact of medication and phenotype , 2015, Movement disorders : official journal of the Movement Disorder Society.

[26]  J. Durbin,et al.  Monte Carlo maximum likelihood estimation for non-Gaussian state space models , 1997 .

[27]  M. R. Novick.  The axioms and principal results of classical test theory , 1965 .

[28]  D. Berg,et al.  Progression of Parkinson's disease in the clinical phase: potential markers , 2009, The Lancet Neurology.