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Data from the citizen-driven initiative is made public for the first time

SEATTLE, Jan. 30, 2024 (GLOBE NEWSWIRE) -- EverythingALS, a non-profit organization focused on research and technology, is pleased to announce the inaugural release of data from its citizen-driven initiative, the Austen Speech Study. Changes in speech are an important aspect of ALS that affects the quality of life of participants. This pioneering effort aims to advance digital biomarker research for the early detection of ALS disease progression and facilitate remote patient monitoring of changes in participants’ speech over time.Speech data collected for the Austen study, both audio and video, will be shared for research to develop novel computational approaches for analyzing speech individuals who are neurologically impaired.

“The Austen Speech Study is an incredibly important milestone. Digital biomarkers for ALS have been hard to develop primarily because there is so little publicly available data.  Now, researchers all over the world can apply machine learning and AI methods to understand how ALS affects speech over time,” said Ernest Fraenkel, PHD, Professor at Massachusetts Institute of Technology. “The technologies that will be built from these data have the potential to transform clinical trials in ALS.”

Founded on a principle of Citizen-Driven Research, EverythingALS developed the Austen Speech study and multiple other observational studies on its “open innovation” platform for conducting large-scale, longitudinal research while maintaining agility and speed by building an active growing community of over 6,000 people with ALS and caregivers as research participants. 

The study has generated 7,000 samples from a diverse, more representative population of participants than is normally seen in on-site studies.  

There are currently no biomarker tests to diagnose ALS, so patients suffer for years not knowing what is wrong and must go through rigorous testing and a process of elimination to finally get diagnosed. And even if they are diagnosed, there are no current treatments and life expectancy is 2-5 years. Participants of the Austen Speech Study are hopeful the open data leads to a quicker way to diagnose the disease and even potential treatment options. “ALS has caused my speech to be altered, which is a very typical characteristic of Bulbar ALS,” said ALS patient and Austen Speech Study participant Jack Gray. “Since my diagnosis of ALS/PLS, I have participated in the EverythingALS Austen Speech Study. Having access to my research data and various analytics, I’m able to see the slow progression of this disease.”

Indu Navar, Founder and CEO of EverythingALS, shared, “We want to thank the incredible efforts put in by our pALS who’ve participated in this and other studies. Together with the urgency of people who are most invested in this fight, we are proving that we can design studies and, ultimately, therapies that better fit the needs of people living with neurodegenerative diseases like ALS.

Academic researchers and EverythingALS’ pre-competitive industry consortium members can now access the data on the EverythingALS website to unlock the potential for introducing speech progression- and EverythingALS’s approach to remote monitoring- as a reliable option as a secondary endpoint in ongoing and future ALS research design. Additionally, study participants can access their own participation history through their own participation portal.

For more information and to access the open data from the Austen Speech Study, please visit: https://www.everythingals.org/available-data. 

About EverythingALS
EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation, a 501(3)c organization, bringing technological innovations and data science to support efforts—from care to cure—for people with ALS, by offering an open-data platform for direct engagement with patients, caregivers, researchers and drug companies. For more information, please visit: www.EverythingALS.org. 

For more information about EverythingALS, contact Christian Rubio at Christian@everythingALS.org.