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Table 1 Overview of included study measures and scales in the Personalized Parkinson Project

From: The Personalized Parkinson Project: examining disease progression through broad biomarkers in early Parkinson’s disease

Method

Outcome

Scales

Visit 1 (Baseline)

Visit 2 (1 Year)b

Visit 3 (2 Years)b

After each visitc

Assessed by trial assessor

Motor functioning in OFFa state

- MDS-UPDRS-III (including H&Y stage)

X

X

X

 

- Timed up-and-go test

X

X

X

 

- Standing leg test

X

X

X

 

- Rapid turning test

X

X

X

 

- Pegboard test

X

X

X

 

Motor functioning in ONastate

- MDS-UPDRS-III (including H&Y stage)

X

X

X

 

- TUG

X

X

X

 

- MDS-UPDRS-IV

X

X

X

 

- Standing leg Test

X

X

X

 

- Rapid Turning Test

X

X

X

 

- Pegboard Test

X

X

X

 

- Grip strength

X

X

X

 

Neuropsychological symptoms

- MDS-UPDRS-I

X

X

X

 

- MoCa (with alternative versions during follow-up)

X

X

X

 

- Phonemic and semantic Fluency

X

X

X

 

- Brixton Spatial Anticipation Test

X

X

X

 

- 15 Words Test

X

X

X

 

- Benton Judgment of Line Orientation

X

X

X

 

- Letter Number Sequencing

X

X

X

 

- Symbol Digit Modalities Test

X

X

X

 

Activities of daily living

- Modified Schwab and England scale

X

X

X

 

Demographics and lifestyle

- Medical history

X

–

–

 

- Lifestyle exposure

X

–

–

 

- Medication (Parkinson and other)

X

X

X

 

- Non-pharmacologic Treatments

X

X

X

 

Biospecimens

- Stool

X

X

X

 

- EDTA Plasma (DNA)

X

–

–

 

- PAX Gene (RNA)

X

X

X

 

- peripheral blood mononuclear cells (PBMCs)

X

–

–

 

- Plasma (no PBMC)

X

X

X

 

- Serum

X

X

X

 

- CSF

X

–

X

 

Autonomic function

- Holter ECG

X

X

X

 

- 12-lead ECG

X

X

X

 

- Blood pressure (standing and supine)

X

X

X

 

Brain structure and function

- Structural MRI (T1, T2, FLAIR, DTI, QSM)

X

–

X

 

- Functional MRI (resting state, task-related)

X

–

X

 

Verily Study Watch

Physiological and environmental parameters

- PPG

Continuous data collection, up to 23 h a day.

- ECG

- IMU including 3-axis accelerometer and 3-axis gyroscope

- EDA

- Skin temperature

- Relative humidity

- Barometric pressure

- Ambient light level

Self reported patient questionnaires

Neuropsychological symptoms

- BDI-II

   

X

- QUIP-RS

   

X

- Apathy scale

   

X

- STAI

   

X

Sleep disorders

- SCOPA- sleep

   

X

- Epworth sleepiness scale

   

X

Quality of life

- PDQ-39

   

X

- SF-12

   

X

Various

- MDS-UPDRS-II

   

X

- SCOPA- aut

   

X

- RBD questionnaire

   

X

- Wearing-off questionnaire

   

X

- New Freezing of Gait Questionnaire

   

X

- Radboud Oral Motor Inventory

   

X

- Screening Questionnaire on Visual Impairment

   

X

- PASE

   

X

Self reported caregiver questionnaires

Burden

- CSI

   

X

  1. BDI Beck Depression Inventory, CSF Cerebro-Spinal Fluid, CSI Caregiver Strain Index, DNA Deoxyribonucleic acid, DTI Diffusion Tensor Imaging, ECG electrocardiogram, EDA electrodermal activity, EDTA Ethylene Diamine Tetra Acid, FLAIR Fluid Attenuation Inversion recovery, H&Y Hoehn & Yahr, IMU Inertial Measurement Unit, MDS-UPDRS-I/II/III/IV Movement Disorders Society-sponsored revision of the Unified Parkinson’s Disease Rating Scale, non-motor experiences of daily living section (I), motor experiences of daily living section (II), motor examination section (III), and motor complications section (IV), MMSE Mini Mental State Examination, MoCa Montreal Cognitive Assessment, MRI Magnetic Resonance Imaging, PASE Physical Activity Scale for the Elderly, PAX genes Paired box genes, PBMC Peripheral Blood Mononuclear Cell, PDQ-39 39-item Parkinson Disease Questionnaire, PPG photoplethysmograph, QSM Quantitative Susceptibility Mapping, QUIP-RS Questionnaire for Impulsive-Compulsive Disorders in Parkinson’s Disease-Rating Scale, RBD Rapid eye movement sleep Behaviour Disorder, RNA Ribonucleic Acid, SCOPA-aut SCales for Outcomes in PArkinson’s disease, autonomic function section, SCOPA-sleep SCales for Outcomes in PArkinson’s disease, sleep section, SF-12 12-item Short Form, STAI State Trait Anxiety Inventory for Adults, TUG Timed Up and Go test
  2. aMedical examinations & clinical assessments will be videotaped unless a subject declines; b ± 60 days; c within 4 weeks after each in-clinic visit
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BMC Neurology

ISSN: 1471-2377

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