2 posts tagged “Parkinson’s Voice Initiative”

The Ups and Downs of Parkinson’s Disease

Posted February 5th, 2013 by

We are all too aware that Parkinson’s disease (PD) is a progressive illness, with tremors, difficulty walking and other symptoms usually getting worse over time.  Here at PatientsLikeMe, and in the clinic, that progression is measured with the Parkinson’s Disease Rating Scale (PDRS). Although you can never really simplify a whole disease down to a few numbers, having that numerical description helps your health care team track your disease and how you are doing over the long haul.

But if you or a loved one has PD, you know that a decline over time is only part of the story. You probably have good days and bad days, depending on all kinds of factors. Understanding those ups and downs is also big part of living with PD. It may also be a big part of treating it.

A Sample PDRS Chart Showing Ups and Downs in Disease Progression

In collaboration with PatientsLikeMe’s Paul Wicks and MIT’s Max Little and Alex Pentland, I have been studying those ups and downs. In our freely available paper recently published in the Journal of Medical Internet Research, we explored mathematically the dynamics of the PDRS. (If you love math, this is the paper for you!)

One of the most important things we found is that these random fluctuations seen in many patients are large enough that they can be considered “clinically meaningful” – just as big as those long-term progression changes that doctors and nurses consider when they think about what treatments may be best for you. So, it is especially important for your team to know how you’ve been doing over the last few weeks, and not just today.

Knowing your own ups and downs may help you figure out your best possible treatment plan. We also hope that by studying the data shared by lots of people like you, we can understand PD better, which will ultimately lead to better treatments for everyone. As always, thanks for sharing!

p.s. For those of you keeping up, yes, the Max Little mentioned above is the very same applied mathematician we’ve partnered with to help advance his groundbreaking research at the Parkinson’s Voice Initiative.  Don’t miss this recent CNN profile of Max’s exciting project, which is based on the theory that the voice (as recorded via a simple phone call) can be used as a biomarker for PD progression.

PatientsLikeMe member tvaughan


PatientsLikeMe and Dr. Max Little Team Up to Advance Parkinson’s Research Through the Patient Voice

Posted December 3rd, 2012 by

TED Fellows Call on Parkinson’s Patients to Help Screen, Monitor Disease Progression

CAMBRIDGE, Mass. — December 3, 2012 —Today, Paul Wicks Ph.D., director of research for PatientsLikeMe, and Max Little, Ph.D., founder of the Parkinson’s Voice Initiative (PVI), kick off a partnership to advance Parkinson’s disease (PD) research through the sound of the patient voice. The two TED Fellows, whose collaboration was recently highlighted on CNN’s “The Next List with Dr. Sanjay Gupta,” are calling on PatientsLikeMe members to record their voices and update their own health profiles to keep track of their disease status.

PatientsLikeMe and PVI have joined forces to further validate Dr. Little’s discovery that the voice can be used as a biomarker for disease progression. Dr. Wicks says, “If Max’s work proves out, this could mean that the cell phones we all carry may be the key to the best biomarker for Parkinson’s disease. The project could also lead the way in lowering the cost and accelerating the discovery of the next generation of treatments. It’s an honor to collaborate with Max and our patients on such transformative work.”

PD is a progressive disorder of the nervous system affecting 6.3 million people worldwide. In a recent TED talk, Dr. Little explains it’s expensive and time consuming to detect the disease early on, and nearly impossible to objectively measure the disease’s progression outside of clinical trials. Through a simple phone call, Dr. Little is testing if the tremors in a voice can be used to diagnose, measure and even assess the effectiveness of PD treatments.

Dr. Little adds, “Voluntary patient registries like the one Jamie Heywood and his team have pioneered are becoming crucial for researchers like me to accelerate and transform discovery. Our work with PatientsLikeMe will help us further validate our research by giving PVI access to more people, and more information, in real time.”

PVI has combined a digital microphone, precise voice analysis software and the latest advances in machine learning to create an unconventional method for automatically screening and monitoring PD. To learn more about the PVI and PatientsLikeMe, visit www.patientslikeme.com/join/pvi.

About PatientsLikeMe
PatientsLikeMe is a patient network that helps improve 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. PatientsLikeMe has become a trusted source for real-world disease information and a clinically robust resource that has published more than 25 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.