A Collaborative Approach to Creating Knowledge-Building Resources for the Early-Stage Parkinson's Disease Community

Parkinson's disease is a progressive neurodegenerative condition; there are no treatments currently available to slow disease progression, and no cure. Scientists are studying new treatments, such as disease-modifying therapies (DMTs), that may help slow progression of Parkinson's. Here, we discuss our approach to initiating a collaboration between industry and the Parkinson's community that explores the needs of people with early-stage Parkinson's and their care partners. The aim was to examine ways to build knowledge for newly diagnosed patients, align on the potential of DMTs and support discussions around any future clinical trial participation.

An exploratory workshop with patient advisors, patient advocacy groups (PAGs), and industry representatives was conducted to evaluate perceptions and identify challenges related to understanding disease modification in early-stage Parkinson's, including the development of a preliminary DMT narrative. Patients and care partners also completed a DMT perceptions questionnaire and tested the narrative for readability. A Strategic Patient Council (SPC) then guided refinement of the narrative and co-created a knowledge-building guide for the Parkinson's community.

A total of 181 people with Parkinson's and their care partners completed the questionnaire. Of these, 72% strongly agreed on the need for new Parkinson's treatments, yet 59% felt that they lacked sufficient knowledge around symptom progression. Based on these data and feedback from the SPC, which comprised nine people from five PAGs, the DMT narrative was revised, leading to improved health literacy from 40% to 61%, within the 'adequate' range of the Suitability Assessment of Materials tool. The knowledge-building guide, informed by SPC input, incorporated a patient-centric framework and described key elements of living with early-stage Parkinson's, ranging from coping with diagnosis to clinical trial involvement.

A collaboration between industry and the Parkinson's community enabled successful development of knowledge-building materials tailored for people living with early-stage Parkinson's, empowering them with a clearer understanding of emerging innovative therapies.