PatientsLikeMe and Sage Bionetworks Launch Open Science Study for People with Parkinson's Disease
In collaboration with TED Fellow Dr. Max Little, the Patient Voice Analysis (PVA) project will for the first time combine data from two sources: phone-based voice recordings that Dr. Little's software collects and analyzes to detect markers of PD; and information reported by patients using PatientsLikeMe's Parkinson's Disease Rating Scale (PDRS), a tool that documents patients' answers to questions that measure treatment effectiveness and disease progression.
Both sets of data will be analyzed by the PVA team composed of Dr. Little and scientists from PatientsLikeMe and Sage Bionetworks. In later phases of the project, the de-identified data sets will be available to the broader research community on Sage Bionetworks' cloud-based computational research platform (www.synapse.org). By crowdsourcing the analysis, the PVA team hopes to identify relationships between voice markers (like 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. Current monitoring efforts for PD typically require patients to undergo multiple lab visits that cost both time and money.
"We want to democratize the process of monitoring disease progression and return the results to patients as quickly as possible, so they are empowered to make the best decisions," said PatientsLikeMe Vice President of Innovation Paul Wicks, Ph.D.. "We invite anyone who has PD to take part and join PatientsLikeMe, so they can stay informed about their condition and generate new insights about this disease," said Wicks.
Dr. Stephen Friend, President and Founder of Sage Bionetworks, echoed Wicks's enthusiasm for the collaboration. "We are so excited by this opportunity to work together with Dr. Little and PatientsLikeMe. If successful, I fully expect that Dr. Little's voice software will be what PD patients and their families the world over use to monitor themselves in real-time, and thereby gain insights on how to better manage their own health."
For more information on the Patient Voice Analysis Project visit:
PatientsLikeMe (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 40 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.