Date: Thursday, June 8, 2017
Session Time: 1:15pm-2:45pm
Location: Exhibit Hall C
Objective: To identify the outcomes of the partnership between Pfizer and the Parkinson’s Disease Foundation (PDF), which was designed to 1. increase understanding of the patient experience; 2. better align clinical trial protocols with this experience and 3. identify potential patient-reported outcome (PRO) tools.
Background: The Parkinson’s Advocates in Research (PAIR) program brings together people with Parkinson’s and care partners, whom PDF has trained in the research process, with research teams to design clinical trials that better meet community needs and priorities. In partnership with Pfizer, it was determined that PDF Research Advocates could provide community insights, opinions and experiences on the following areas to inform Pfizer research: challenges to functioning, activities of daily living, quality of life and barriers to clinical trial participation.
Methods: Seven PDF Parkinson’s Advocates in Research Advocates were recruited, using a non-probability quota sampling strategy, to participate in a one-day patient panel structured around answering a series of open-ended questions developed by PDF staff in partnership with Pfizer. Data were transcribed and content was analyzed using descriptive statistics and thematic analysis.
Results: PDF generated a report with eight recommendations including: prioritizing PD related symptoms, clarifying PD-specific definitions for PRO tools, altering PRO tools to employ a one-week recall period, and promoting positive messaging and communications between research sites and people with PD to attract more people into clinical trials. Three of these recommendations directly resulted in modifications to a clinical trial design. Other insights were incorporated indirectly. Pfizer staff viewed this structured interaction with patients as an efficient and effective way to increase the voice of the patient in trial design.
Conclusions: Patient advocacy organizations play a crucial role in representing the PD experience to more efficiently design protocols and influence outcomes of clinical trials. The PDF/Pfizer patient panel project demonstrated the value of partnerships between industry and patient advocacy organizations.
*Abstract will be presented at Alzheimer’s & Parkinson’s Diseases Congress – AD/PD™ Vienna, 2017
To cite this abstract in AMA style:K. Schroeder, M. Fenney, D. Gray, T. Rolph, S. Sohur, V. Todaro. Improving Clinical Trials Through Patient Input: Outcomes of a Partnership Between Pfizer and the Parkinson’s Disease Foundation [abstract]. Mov Disord. 2017; 32 (suppl 2). https://www.mdsabstracts.org/abstract/improving-clinical-trials-through-patient-input-outcomes-of-a-partnership-between-pfizer-and-the-parkinsons-disease-foundation/. Accessed March 1, 2024.
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