One day monitoring the progression of Parkinson’s disease could be as simple as a phone call. At least that’s the idea of a collaboration between PatientsLikeMe and Sage Bionetworks, which promotes innovations in personalized medicine. They are looking for people with Parkinson’s disease to participate in a voice analysis study with the caveat that patients will get access to results “as soon as possible,” according to a statement from the patient-focused group. The long-range goal is to reduce the cost of monitoring and make it more efficient.
The study’s design is part of a push to democratize clinical trials. Up to 1.5 million Americans have the disease, according to Parkinson’s Action.
The Patient Voice Analysis project is centered on a life science innovation to develop voice analysis tools that use machine learning to monitor the progression of Parkinson’s. It will combine data from two sources: phone-based voice recordings and software developed by TED fellow Dr Max Little to detect markers of Parkinson’s disease. Study participants will use PatientsLikeMe’s Parkinson’s Disease Rating Scale, which documents patients’ answers to questions and measures treatment effectiveness and disease progression.
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The motivation behind crowdsourcing the analysis is to identify relationships between voice markers, such as tremors in speech, and clinical signs of Parkinson’s disease, such as tremors in the body, so that it becomes possible to monitor patients’ progression with a short phone call. Currently, monitoring patients with Parkinson’s requires them to undergo multiple lab visits which can ramp up costs and take more time.
The data from the study will be analyzed by Little and scientists from PatientsLikeMe and Sage Bionetworks. As the study progresses, the de-identified data sets will be made available to the research community through Sage Bionetworks’ cloud-based computational research platform.
People with Parkinson’s disease interested in participating in the study can read more about it here.