Objective: The Patient Endpoint Preference Project (PEPP) aims to identify and quantify early‑stage PD patients’ priorities around symptoms and their progression using patient‑reported questionnaires. The study evaluates (a) which symptoms have the greatest negative impact on daily life, (b) what delay in symptom progression patients consider meaningful, and (c) which patient-reported outcomes (PROs) best reflect patient‑perceived burden. We report interim findings on symptom burden.
Background: PD research traditionally emphasizes clinician‑rated motor outcomes, which may not fully reflect what patients consider most meaningful. Complementing that with patient perspectives is therefore valuable for designing disease‑modifying trials and defining clinically important delays in symptom progression.
Method: The study plans to enroll 1000 participants (UK/US) through the AccessPD registry. Eligible participants (35–80 years) have PD for 1–7 years, surrogate Hoehn & Yahr ≤2.5, and are receiving symptomatic treatment. Registry data provide demographic and clinical information. Participants complete a symptom‑burden and delay‑preferences questionnaire (SBDPQ), followed by a discrete choice experiment (DCE) to quantify preferences for delaying the progression of the most bothersome symptoms previously identified in the SBDPQ. SBDPQ responses will be mapped to identify best suited PROs tests.
Results: At interim analysis (data cut-off 11-12-2025), 272 participants (mean age 69.3; 60% male; 96% receiving PD medications) had completed the SBDPQ. The symptom domains most frequently reported as having the “most negative impact” on daily life were associated with movement/tremor (68%, with tremor and walking/balance/posture issues cited most often as individual symptoms [16% and 8%]), sleep (46%), and urinary problems (36%). Additionally, tremor and walking/balance/posture issues were the symptoms participants indicated as having the greatest negative impact on their lives should they get worse as their PD progresses (24% of participants).
Conclusion: Interim findings highlight the burden of motor symptoms, particularly tremor, within the early PD population. Findings from this study will inform which PROs best capture symptoms that early‑stage PD patients find most impactful for future disease‑modifying trials.
References: Acknowledgement
The Authors would like to thank representatives from The Michael J. Fox Foundation for Parkinson’s Research – Dr. Catherine Kopil, Katharina Klapper, Yuge Xiao, and Julianna Sullivan and Parkinson’s UK – Dr. Nikul Bakshi– for providing input and review on part of this research protocol.
To cite this abstract in AMA style:
V. Di Foggia, A. Noyce, E. Shelton, J. Mammen, F. de Renzis, A. Hursey, N. Wickramasekera, D. Rowen, M. Wilson, D. Magalhaes, J. Holenz, G. Harrison-Jones. Patient perspectives on meaningful symptoms and disease progression in Parkinson’s Disease (PD): Interim findings from the Patient Endpoint Preference Project (PEPP) [abstract]. Mov Disord. 2026; 41 (suppl 1). https://www.mdsabstracts.org/abstract/patient-perspectives-on-meaningful-symptoms-and-disease-progression-in-parkinsons-disease-pd-interim-findings-from-the-patient-endpoint-preference-project-pepp/. Accessed October 1, 2026.« Back to 2026 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/patient-perspectives-on-meaningful-symptoms-and-disease-progression-in-parkinsons-disease-pd-interim-findings-from-the-patient-endpoint-preference-project-pepp/