Clinician and Patient Perspectives on Meaningful Parkinson's Disease Impacts

A collection of qualitative perspectives from clinicians and patients on meaningful impacts of Parkinson's disease, gathered from an advisory panel of 8 clinical experts and an online survey of 202 people with PD. It classifies reported functional impacts using a meaningfulness scheme scaled as low, medium, or high. The data informed the design of a digital endpoint instrument for PD assessment.

Use Cases

• Analyze the meaningfulness classification scheme (low, medium, high) applied to reported PD functional impacts to identify priority areas for digital assessment.
• Compare clinician perspectives from the 8-expert panel with patient perspectives from the 202-person survey on bothersome motor aspects like tremor and rigidity.
• Investigate the alignment between patient-reported non-motor aspects, such as depression and fatigue, and their scaled meaningfulness for clinical trial design.
• Examine the subset of motor and non-motor PD aspects identified as most meaningful for improvement to guide digital instrument feature selection.

Strengths

• Data integrates perspectives from 8 clinical experts and 202 surveyed patients with Parkinson's disease.
• Findings are structured using a defined meaningfulness classification scheme (low, medium, high).
• Results directly informed the design of a specific digital health instrument, the PD-FIDI.

Limitations

• The dataset is a qualitative summary document (41.8 KB DOCX), not a structured, machine-readable tabular dataset.
• Sample size for the patient survey (n=202) is modest and may not represent the full diversity of the PD population.
• The data represents perspectives at a point in time and does not contain longitudinal tracking of disease progression.

Provenance

Source

Andrew Pearlmutter via figshare.

Collection Method

Clinician perspectives from an 8-member expert panel; patient perspectives from an online survey of 189 people with idiopathic PD and 13 people with PD and GBA1 mutation, informed by a literature review.

Freshness

Last updated March 20, 2026.