A longitudinal guide to early Parkinson’s progression

Critical Path Institute® (C-Path) applauds the publication of a new study in the Journal of Neurology that offers critical longitudinal insights into how symptoms and functional impacts evolve for individuals with early Parkinson's disease (PD).

Led by Jamie Adams, M.D., and Jennifer Mammen, Ph.D., long-time partners of C-Path's Critical Path for Parkinson's consortium, the paper is titled, "Three years later: tracking bothersome symptoms and impacts for people with early Parkinson's disease."

Funded by The Michael J. Fox Foundation for Parkinson's Research (Grant #MJFF-024503 and # MJFF-022743), this study followed participants prospectively for three years.

Reaching this milestone represents a special moment for our collaborative team. We have championed the integration of the patient voice from the very beginning and seeing these perspectives formally shape the scientific record feels like the culmination of a deep and long-term partnership that has fundamentally changed how we approach clinical observation."

Dr. Jamie Adams, MD, Study Senior Author, Critical Path Institute

Longitudinal tracking of participants was grounded in the use of wearable devices to assess real-world experiences of people with Parkinson's disease. The results showed that functional impairment continued to worsen over time, even in cases where specific symptoms appeared to plateau. Gait, balance, and posture emerged as the most bothersome issues, with the effort required for daily activities increasing significantly alongside the psychosocial burden. These findings underscore the importance of incorporating real-world measures of disease progression alongside traditional symptom assessments in clinical trial design.

"At C-Path, our goal is to put robust and patient-centered measurement tools directly in the hands of drug developers so they can design the very best clinical trials," said Diane Stephenson, Ph.D., C-Path Vice President of Neurology and Executive Director of the Critical Path for Parkinson's consortium. "Validating real-world impacts supports a more informed and efficient development process and streamlines trial design so researchers can focus on innovation."

"Growing opportunities to advance patient-centered measurement through digital health technologies are evident in the findings. Integrating measures of gait and balance with longitudinal patient-reported assessment offers a powerful method to monitor disease progression, said Vice President of C-Path's Clinical Outcome Assessment Program Cheryl Coon, Ph.D. "The findings of this research align with C-Path's core competencies in patient focused drug development led by C-Path's Clinical Outcome Assessment Program."

"C-Path's focus on the voice of people living with Parkinson's disease is a key north star and critical in the evaluation of how wearable devices can reliably track our symptoms in real time," said Sarah Zenner Dolan, a person living with early-onset Parkinson's and a research participant.

"This study reflects the importance of integrating the lived experience of people with Parkinson's disease into longitudinal research," said Yuge Xiao, Clinical Research Lead at The Michael J. Fox Foundation for Parkinson's Research and co-author of the publication. "Combining digital measures with participant interviews ensures that there is a clear link between what digital measures capture and changes that matter to people with Parkinson's, and informs how these tools can be used meaningfully in clinical trials."