Visiting the Personalized Parkinson's Project
Last month, we had the pleasure of attending a participant event for the Personalized Parkinson's Project (PPP), along with Ritu Kapur, Verily’s head of Digital BioMarkers and Neurology product manager, and Cindy Yee, Digital BioMarkers and Neurology program manager. PPP is a multi-year study in the Netherlands to identify molecular and digital markers and explore the many factors that could impact the course of Parkinson’s disease. The study is a collaboration between Radboud University Medical Center, Radboud University, ParkinsonNet, and Verily.
The event was held in and hosted by the city of Nijmegen, where an audience of nearly 500 people, consisting of current participants of PPP and their guests, gathered to hear about the progress of the study, learn more about our research goals, and connect with each other on their experiences.
All study participants in PPP receive an investigational use Verily Study Watch 1 to enable continuous and objective measurement of participants’ symptoms in a real-world context. For most people, the symptoms of Parkinson’s disease are often only evaluated in a clinical setting, once or twice a year during a visit with their neurologist. Study Watch enables ongoing collection of physiological and environmental signals day-to-day, allowing our research team to explore the natural variation of the condition and study factors that may impact symptom severity and disease progression. Of course this requires that participants do, in fact, wear the watch. At Verily, our user experience research team designed the Study Watch with this in mind, and at the event I was able to report an exciting number: those enrolled in PPP wore their Study Watch an average of 22 hours a day. This amounts to more than 1 million hours of active wear-time to date, just 16 months into study enrollment! Furthermore, retention in the program has been excellent, with 99% of participants remaining in the study so far.
Those enrolled in PPP wore their Study Watch an average of 22 hours a day. This amounts to more than 1 million hours of active wear-time to date, just 16 months into study enrollment.
The extent of this engagement emboldens our research by providing a full and rich window into many of the symptoms of Parkinson’s disease. I applaud my colleagues for this design success and implementation milestone, but just as importantly, I am grateful to the participants of PPP. This progress is a testament to their commitment and passion, which was palpable during the day-long participant event where 230 of our 280 enrolled participants were in attendance. They were engaged in our presentations and when gathered at lunch, were actively chatting and sharing information about themselves and their experience with Parkinson’s disease.
As we begin our initial analysis with our partners, led by Principal Investigator Professor Bas Bloem, PPP continues to enroll participants based in the Netherlands. Our team is excited to bring more people into this strong community of participants, now that we are nearing the halfway mark of our target enrollment. Armed with the data generously provided by study participants, we are hopeful that our team of collaborators will ultimately make important discoveries that will impact the future of Parkinson’s care.