Open Science and Digital Health: A Brighter Future for Parkinson’s Disease

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Every six minutes, someone in the United States receives a new diagnosis¹ of Parkinson’s disease. For the millions living with this neurological disorder, each day brings a range of symptoms. Despite its prevalence as the second most common² neurodegenerative disorder, too much of Parkinson's disease (PD) remains an enigma. Root causes are not fully understood,³ disease progression can be unpredictable,⁴ and current treatments cannot change the course of the disease.

While medications and various therapies can help reduce or manage symptoms, the many manifestations of PD — from motor impairments to cognitive and other autonomic issues — underscore the pressing need for even stronger, more targeted research efforts to develop better therapeutics and care approaches.

Digital health technologies (DHTs), which are technologies that use sensors to collect, analyze, and transmit health related data, are helping advance research by providing innovative ways to measure or track symptoms, disease progression, and patient experiences. By working together and leveraging these new opportunities for digital measures and technologies,⁵ we can scale our efforts to unlock more of the mysteries of PD and revolutionize research and clinical care.

Organizations like The Michael J. Fox Foundation (MJFF),⁶ Critical Path Institute (C-Path),⁷ and the Digital Medicine Society (DiMe)⁸ are at the forefront of this endeavor. By championing open science principles and fostering collaborative research, we are accelerating progress by facilitating the exchange of data, insights, and resources. Initiatives like the new open-access Library of Digital Measurement Products⁹ for Parkinson's disease, a joint effort between MJFF, C-Path’s Critical Path for Parkinson’s (CPP)¹⁰ consortium, and DiMe, serve as centralized resources to benchmark the state of digital measurement for PD, catalyze novel measure development opportunities, and incentivize data sharing.

Digital health technologies (DHTs) offer exciting new opportunities to accelerate research,¹¹ enhance clinical care, and ultimately improve outcomes for those living with PD. Wearable devices, smartphone and smartwatch applications, and ambient monitoring systems provide unprecedented opportunities for early detection, personalized treatment, and longitudinal data gathering in natural settings. These technologies can streamline study participant access and participation, facilitate longitudinal data collection, and aggregate evidence of efficacy, accelerating the development and approval of novel treatment.

Bridging the translational gap

Collaborative approaches aided by digital measurement tools can bridge the critical gap between scientific discovery and clinical applications in PD. Our Library-building work identified digital health technologies including wearable devices, smartphone and smartwatch applications, and remote monitoring systems that offer unprecedented opportunities to accelerate the development, approval, and adoption of novel interventions in clinical research. They can capture ongoing clinically relevant data and novel signals¹² that would be less accessible through traditional clinic or site visits. This improves trial efficiency and patient representation¹³ by enabling remote data from diverse populations.

By leveraging digital measures and endpoints, researchers can better identify intervention windows and understand an intervention's impact, building a robust evidence base to facilitate regulatory approval processes. This paves the way for faster translation of promising therapeutics from the lab to the clinic, ultimately improving patient outcomes and quality of life.

Transforming care delivery

The potential of digital health technologies in Parkinson's disease extends far beyond clinical research. The wealth of longitudinal data collected empowers clinicians and researchers to obtain better insights into the PD experience, identify earlier diagnostic and symptom signals, and tailor personalized treatment plans. For example, longitudinal data captured via smartwatch and smartphone in PD populations¹⁴ can track changes in speech, gait, tremor, and physical activity parameters more sensitively than traditional clinical assessments.¹⁵

Each patient experiences Parkinson's disease differently,¹⁶ requiring nuanced approaches to care. DHTs can unobtrusively track movement patterns, tremors, speech changes, and fluctuations in mobility and cognition, providing important feedback to patients and clinicians. This enhances understanding of PD, enables timely interventions, and improves care delivery.

The work ahead

While DHTs for PD are advancing, challenges remain¹⁷ (particularly for emerging technologies) around analytical and clinical validity,¹⁸ as well as ongoing ethical concerns¹⁹ and regulatory considerations.²⁰ Significant opportunities exist for PD patients, clinicians, and researchers to use evidence-based DHTs and share results openly. The global PD community must continue to collaborate and share expertise and evidence to advance innovation and pave the way for a future where Parkinson’s disease is no longer an enigma. Through collective wisdom and cutting-edge tools, we can advance PD research and care, moving closer to transformative therapeutics, and, hopefully, a cure.

Sarah Averill Lott, Research Lead, Digital Medicine Society. Diane Stephenson, Executive Director, Critical Path for Parkinson’s Consortium. Yuge Xiao, Associate Director, Clinical Research at The Michael J. Fox Foundation for Parkinson’s Research

References

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