Therapeutic area · Parkinson's diseaseUpdated September 28, 2026

EDC for Parkinson's disease trials

Parkinson's trials measure motor function in the clinic, fluctuations at home and non-motor symptoms that matter as much to patients. Capture puts MDS-UPDRS sections, medication timing and home diaries in one study.

  • MDS-UPDRS rater and participant parts
  • Medication state and timing
  • Home diaries

Free sandbox · No credit card · 21 CFR Part 11 aligned

Home diary summary · Subject 007-0014

OFF time (h/day)

4.5

Good ON time (h/day)

10.0

Diary days valid

3/3

ON without dyskinesia8/16
ON with non-troublesome dyskinesia2/16
ON with troublesome dyskinesia1.5/16
OFF4.5/16
Averaged over the diary days before the visit

What matters in Parkinson's trials

  • The MDS-UPDRS is the standard rating scale: participant-completed sections on daily living and a rater-led motor examination.
  • Motor scores depend on medication state, so every examination needs the ON or OFF state and the time since the last dose.
  • Trials of motor fluctuations use home diaries that record time spent OFF and ON with or without troublesome dyskinesia, usually for several days before each visit.
  • Early disease-modification trials follow people for a year or more, often using the sum of MDS-UPDRS Parts I to III or time to needing symptomatic treatment.
  • Non-motor symptoms such as cognition, sleep, mood and autonomic problems are increasingly important endpoints.

Study design

Clinic ratings and home diaries tell different stories

A motor examination captures one moment in the clinic. People with fluctuating Parkinson's may be well controlled at 10 a.m. and barely able to move at 2 p.m. That is why fluctuation trials rely on home diaries, in which participants record their state across the day, typically for three consecutive days before each visit. Diary endpoints such as change in daily OFF time are primary in many trials of adjunct therapies.

The classic paper diary asks participants to record their state for every half-hour period while awake. Electronic diaries improve timing and legibility, but the design needs care: participants must be trained, entries should be made close to real time, and valid diary days should be defined in the protocol. Plan how the diary will be structured and validated before building it.

Caregivers

Advanced Parkinson's often involves a care partner who helps with questionnaires and diaries. Record who completed each entry, and decide in advance whether caregiver-assisted entries are acceptable for each measure.

MDS-UPDRS Part III · Week 12
Subject 007-0014 · Certified raterDraft

Medication state

MEDSTATE
OFFON

Time of last levodopa dose

LDTIM
20:30 (previous evening)

Time of examination

EXTIM
09:05

Hoehn and Yahr stage

HYSTAGE
2
Hours since last dose calculated from two times

Timing

Medication timing calculated, not estimated

Calculated fields show the minutes or hours between two date-times read-only during entry, so the time since the last dose is computed from what the site records rather than typed by hand. Participant sections of the MDS-UPDRS can be completed on a clinic device at the start of the visit, and rater sections are site forms completed by the certified rater.

  • Time between two date-times calculated at entry.
  • Participant and rater sections in one visit.
  • Rater recorded in the audit trail.
MDS-UPDRS eCRF template
Calculated field

BMI (Body Mass Index)

Auto-derived

Height (cm)

172

Weight (kg)

68.5

Result

23.2 kg/m²

Reference: WHO · shown read-only during data entry

AnthropometryBMIBSA (Mosteller)BSA (Du Bois)Waist-hip ratio
VitalsMAPPulse pressure
RenaleGFR (CKD-EPI 2021)CrCl (Cockcroft-Gault)
CardiacQTc (Bazett)QTc (Fridericia)QTcF from heart rate
DatesAge from DOBMinutes betweenHours between

Build an MDS-UPDRS visit with timing fields

Set it up in the free sandbox and test the calculated fields.

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Endpoints

Parkinson's endpoints by trial type

Trial typeTypical endpoints
Symptomatic, early PDMDS-UPDRS Parts II and III, CGI or PGI
Adjunct therapy for fluctuationsDaily OFF time and good ON time from home diaries, MDS-UPDRS Part IV
Dyskinesia treatmentDyskinesia rating scales, diary ON time with troublesome dyskinesia
Disease modificationMDS-UPDRS Parts I to III sum, time to symptomatic treatment, digital measures
Non-motor symptomsCognition, sleep, mood, orthostatic hypotension measures

New measures

Wearables and biomarkers

Disease-modification trials in early Parkinson's face a problem: change is slow and rating scales are noisy. Wearable sensors that measure gait, tremor and activity at home, and biomarkers such as dopamine transporter imaging or alpha-synuclein assays, are increasingly used to enrich populations and as exploratory outcomes. These need the same data discipline as any endpoint: defined collection windows, time alignment with clinical assessments, and clear links between device data and study records.

See digital biomarker validation study software for how reference measures and device metrics fit in one study, and EDC for wearable device studies.

Study build

Parkinson's study build checklist

Medication state procedure

OFF-state withholding period and timing fields.

Endpoint parts

MDS-UPDRS parts and state defined for the primary analysis.

Diary design

Structure, training, days before visits and valid-day rules.

Rater certification

Before rating participants.

Caregiver role

Who may assist and how assistance is recorded.

Non-motor measures

Cognition, sleep and mood scheduled if relevant.

FAQ

Questions teams ask before they switch

Something not covered here? Ask us directly.

What is the main rating scale in Parkinson's trials?

The MDS-UPDRS, with participant-completed sections on daily living and a rater-led motor examination.

Why record ON and OFF state?

Motor scores change greatly with medication. The state and time since the last dose are needed to interpret each examination.

What is an ON/OFF diary?

A home diary in which participants record their motor state across the day, used to measure OFF time and good ON time.

Can Capture calculate time since the last dose?

Yes. Calculated fields can show the minutes or hours between two date-times during entry.

Can caregivers help complete questionnaires?

Yes, if the protocol allows it. Record who completed each entry.

Can I try it free?

Yes, in the free sandbox with every feature.

Parkinson's data with the context it needs

Ratings, timing and diaries in one study. Free sandbox.

Build your Parkinson's study free