The Parkinson's disease e‐diary: Developing a clinical and research tool for the digital age

Joaquin A. Vizcarra, MD, Alvaro Sánchez-Ferro, MD, PhD, Walter Maetzler, MD, Luca Marsili, MD, PhD, Lucia Zavala, MD, Anthony E. Lang, MD, FRCPC, Pablo Martinez-Martin, MD, PhD, Tiago A. Mestre, MD, MSc, Ralf Reilmann, MD, Jeffrey M. Hausdorff, PhD, E. Ray Dorsey, MD, MBA, Serene S. Paul, PhD, Judith W. Dexheimer, PhD, Benjamin D. Wissel, BS, Rebecca L. M. Fuller, PhD, Paolo Bonato, PhD, Ai Huey Tan, MD, MRCP, Bastiaan R. Bloem, MD, PhD, Catherine Kopil, PhD, Margaret Daeschler, BA, Lauren Bataille, MS, Galit Kleiner, MD, FRCPC, Jesse M. Cedarbaum, MD, Jochen Klucken, MD, Aristide Merola, MD, PhD, Christopher G. Goetz, MD, Glenn T. Stebbins, PhD, and Alberto J. Espay, MD, MSc,* on behalf of the MDS Technology Task Force and the MDS Rating Scales Program Electronic Development Ad-Hoc Committee

[1]  Dimitrios Hristu-Varsakelis,et al.  A Smartphone-Based Tool for Assessing Parkinsonian Hand Tremor , 2015, IEEE Journal of Biomedical and Health Informatics.

[2]  B. Salzman,et al.  Health Literacy in Primary Care Practice. , 2015, American family physician.

[3]  T. Müller,et al.  Different response to instrumental tests in relation to cognitive demand after dopaminergic stimulation in previously treated patients with Parkinson’s disease , 2020, Journal of Neural Transmission.

[4]  Angelo Antonini,et al.  Wearable sensor-based objective assessment of motor symptoms in Parkinson’s disease , 2015, Journal of Neural Transmission.

[5]  S. Friend,et al.  The mPower study, Parkinson disease mobile data collected using ResearchKit , 2016, Scientific Data.

[6]  R. M. Stewart,et al.  The sensitivity and specificity of the 9-item Wearing-off Questionnaire. , 2008, Parkinsonism & related disorders.

[7]  J. Broderick Electronic Diaries , 2012, Pharmaceutical Medicine.

[8]  B. Bloem,et al.  Quantitative wearable sensors for objective assessment of Parkinson's disease , 2013, Movement disorders : official journal of the Movement Disorder Society.

[9]  D. Collins Pretesting survey instruments: An overview of cognitive methods , 2003, Quality of Life Research.

[10]  Ludger Klimek,et al.  Visual analogue scales (VAS): Measuring instruments for the documentation of symptoms and therapy monitoring in cases of allergic rhinitis in everyday health care , 2017, Allergo Journal International.

[11]  H. Reichmann,et al.  Quantitative assessment of non-motor fluctuations in Parkinson’s disease using the Non-Motor Symptoms Scale (NMSS) , 2015, Journal of Neural Transmission.

[12]  D. Price,et al.  How should we use the visual analogue scale (VAS) in rehabilitation outcomes? II: Visual analogue scales as ratio scales: an alternative to the view of Kersten et al. , 2012, Journal of rehabilitation medicine.

[13]  G. Stebbins,et al.  Efficacy of a patient‐training videotape on motor fluctuations for on‐off diaries in parkinson's disease , 1997, Movement disorders : official journal of the Movement Disorder Society.

[14]  Susan H Fox,et al.  Clinical spectrum of levodopa‐induced complications , 2015, Movement disorders : official journal of the Movement Disorder Society.

[15]  R. Pahwa,et al.  Objective measurement in Parkinson’s disease: a descriptive analysis of Parkinson’s symptom scores from a large population of patients across the world using the Personal KinetiGraph® , 2020, Journal of Clinical Movement Disorders.

[16]  Anirvan Ghosh,et al.  Evaluation of smartphone‐based testing to generate exploratory outcome measures in a phase 1 Parkinson's disease clinical trial , 2018, Movement disorders : official journal of the Movement Disorder Society.

[17]  Dag Nyholm,et al.  A smartphone-based system to quantify dexterity in Parkinson's disease patients , 2017 .

[18]  S. Coughlin Recall bias in epidemiologic studies. , 1990, Journal of clinical epidemiology.

[19]  L. Seeberger,et al.  A Home Diary to Assess Functional Status in Patients with Parkinson's Disease with Motor Fluctuations and Dyskinesia , 2000, Clinical neuropharmacology.

[20]  M. O. Olde Rikkert,et al.  Visual analogue scales: scale recalibration by patients with dementia and their proxies , 2012, Quality of Life Research.

[21]  Bryan T. Cole,et al.  High‐resolution tracking of motor disorders in Parkinson's disease during unconstrained activity , 2013, Movement disorders : official journal of the Movement Disorder Society.

[22]  Y. Temel,et al.  Mobile Health Daily Life Monitoring for Parkinson Disease: Development and Validation of Ecological Momentary Assessments , 2019, JMIR mHealth and uHealth.

[23]  P. Bonato,et al.  mHealth and wearable technology should replace motor diaries to track motor fluctuations in Parkinson’s disease , 2020, npj Digital Medicine.

[24]  Christian Herff,et al.  Monitoring Parkinson’s disease symptoms during daily life: a feasibility study , 2019, npj Parkinson's Disease.

[25]  S. Silverstein,et al.  Initial development of a patient-reported outcome measure of experience with cognitive impairment associated with schizophrenia , 2017, Patient related outcome measures.

[26]  Angelo Antonini,et al.  Wearing‐off scales in Parkinson's disease: Critique and recommendations , 2011, Movement disorders : official journal of the Movement Disorder Society.

[27]  Dietrich Haubenberger,et al.  Validation of digital spiral analysis as outcome parameter for clinical trials in essential tremor , 2011, Movement disorders : official journal of the Movement Disorder Society.

[28]  A. Lang,et al.  Development of a Non-Motor Fluctuation Assessment Instrument for Parkinson Disease , 2011, Parkinson's disease.

[29]  S. Papapetropoulos Patient Diaries As a Clinical Endpoint in Parkinson's Disease Clinical Trials , 2012, CNS neuroscience & therapeutics.

[30]  W. Ding,et al.  Neurodegeneration and cognition in Parkinson's disease: a review. , 2015, European review for medical and pharmacological sciences.

[31]  Michelle A. Burack,et al.  Automatic assessment of medication states of patients with Parkinson's disease using wearable sensors , 2016, 2016 38th Annual International Conference of the IEEE Engineering in Medicine and Biology Society (EMBC).

[32]  S. Shiffman,et al.  Patient compliance with paper and electronic diaries. , 2003, Controlled clinical trials.

[33]  Suchi Saria,et al.  Using Smartphones and Machine Learning to Quantify Parkinson Disease Severity: The Mobile Parkinson Disease Score , 2018, JAMA neurology.

[34]  O. Lindvall,et al.  Use and interpretation of on/off diaries in Parkinson’s disease , 2004, Journal of Neurology, Neurosurgery & Psychiatry.

[35]  M. Ploughman,et al.  Applying cognitive debriefing to pre-test patient-reported outcomes in older people with multiple sclerosis , 2010, Quality of Life Research.

[36]  Daniel Kahneman,et al.  Evaluation by Moments: Past and Future , 2002 .

[37]  Robert F. DeVellis,et al.  Scale Development: Theory and Applications. , 1992 .

[38]  Antonio Torralba,et al.  Through-Wall Human Pose Estimation Using Radio Signals , 2018, 2018 IEEE/CVF Conference on Computer Vision and Pattern Recognition.

[39]  Paolo Barone,et al.  International multicenter pilot study of the first comprehensive self‐completed nonmotor symptoms questionnaire for Parkinson's disease: The NMSQuest study , 2006, Movement disorders : official journal of the Movement Disorder Society.

[40]  G. Ebersbach,et al.  Assessment of Nonmotor Fluctuations Using a Diary in Advanced Parkinson's disease. , 2016, Journal of Parkinson's disease.

[41]  Paolo Bonato,et al.  Monitoring Motor Fluctuations in Patients With Parkinson's Disease Using Wearable Sensors , 2009, IEEE Transactions on Information Technology in Biomedicine.

[42]  T. Ploetz,et al.  Unsupervised home monitoring of Parkinson's disease motor symptoms using body-worn accelerometers. , 2016, Parkinsonism & related disorders.