As the COVID-19 pandemic continues into 2021, many people have adjusted to a new reality of remote telehealth consultations for everything from routine checkups to specialist visits. For people living with amyotrophic lateral sclerosis (ALS), it’s all the more important to continue to monitor their disease progression while minimizing risk by maintaining social distancing as much as possible. The ALS Therapy Development Institute’s (ALS TDI) Precision Medicine Program (PMP) gives people with ALS access to free tools to track their disease from the safety of their homes – while simultaneously contributing to ALS TDI’s mission to find effective treatments for ALS.
What is the Precision Medicine Program?
The PMP is the most comprehensive and longest running translational research study in ALS. Through the PMP, researchers at ALS TDI partner with people with ALS to gather data to learn more about this disease. People from around the world to share their data on movement, lifestyle, medical history, genetics, biomarkers, voice recordings and patient cell biology.
The PMP has always been a telehealth program – part of what makes it unique is the ease of signing up and participating, which people living with ALS can do from anywhere in the world. However, this element has become essential to its continued success despite the many challenges of 2020. While some aspects of program, like in-home blood collection, have been temporarily suspended, we have continued to gather data from hundreds of people and welcomed many new participants into the program.
Why Participate?
Participation in the PMP is free, and anyone with ALS can contribute their data — regardless of where they live or how far their symptoms have progressed. As a PMP participant you can access all of your data through and easy-to-use online dashboard – allowing you to monitor your progression and see if any interventions like medications, supplements, dietary changes, or exercise programs are having any effect.
Participants, who enroll through ALS TDI’s website, are asked to provide several different categories of data about themselves and their condition. At the outset of their participation, and every three months thereafter, they complete a personal background survey covering things like lifestyle, medical history, occupation, and ALS symptoms.
Those who meet certain criteria are provided accelerometers – devices that can be worn on the wrists and ankles to track the movements of each limb. Worn for three days each month while participants perform a directed series of movements, these accelerometers provide precise data about how each participant’s ALS progression is affecting their motor function. Similarly, participants can track how the disease is affecting their speech. They are asked to record a series of phrases every month over phone. These recordings are then analyzed through techniques developed in collaboration with Google artificial intelligence researchers.
In addition to being a tool for participants, this data is invaluable for ALS TDI’s researchers as they look for effective treatments for ALS, as well as ways to better understand the disease and improve the way clinical trials are run.
In 2021, as in previous years, our goal will be to enroll 100 new participants for the PMP. If you’re interested in learning more and signing up, click here.