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Updated: Apr 30, 2026

Dynamic Digital Biomarkers of Motor and Cognitive Function in Parkinson's Disease
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A Collaborative Approach to Creating Knowledge-Building Resources for the Early-Stage Parkinson's Disease Community.

Soania Mathur1, Harold de Wit2, Becky Jones3

  • 1Patient Expert, Toronto, ON, Canada. soaniamathur@unshakeablemd.com.

Neurology and Therapy
|April 28, 2026
PubMed
Summary
This summary is machine-generated.

This study highlights the importance of patient collaboration in developing effective knowledge-building materials for early-stage Parkinson's disease (PD). Patient input improved understanding of disease-modifying therapies (DMTs) and clinical trial participation for PD patients.

Keywords:
Disease-modifying therapiesHealth literacyIndustry collaborationParkinson’s diseasePatient educationPatient engagement

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Area of Science:

  • Neuroscience
  • Patient Advocacy

Background:

  • Parkinson's disease (PD) is a progressive neurodegenerative disorder with no current cure or treatments to slow its progression.
  • Research is exploring disease-modifying therapies (DMTs) to potentially slow PD progression.

Purpose of the Study:

  • To initiate an industry and Parkinson's community collaboration to understand the needs of early-stage PD patients and their care partners.
  • To explore knowledge-building strategies for newly diagnosed patients regarding DMTs and clinical trial participation.

Main Methods:

  • An exploratory workshop was conducted with patient advisors, advocacy groups, and industry representatives.
  • A questionnaire assessed patient and care partner perceptions of DMTs, followed by narrative testing and refinement.
  • A Strategic Patient Council (SPC) guided the co-creation of a knowledge-building guide.

Main Results:

  • 181 individuals with PD and care partners completed the questionnaire; 72% desired new treatments, while 59% lacked knowledge on symptom progression.
  • A revised DMT narrative improved health literacy from 40% to 61% among participants.
  • A patient-centric knowledge-building guide was developed, covering diagnosis, coping, and clinical trial involvement.

Conclusions:

  • Collaboration between industry and the Parkinson's community successfully created tailored knowledge-building materials for early-stage PD.
  • These materials empower patients with a better understanding of emerging therapies and research participation.