New $400K grant aims to help ID digital diagnostic markers in ALS
2-year award from nonprofits seeks to improve early detection of ALS
A new two-year, $400,000 grant will support studies — by EverythingALS and the Sean M. Healey and AMG Center for ALS at Massachusetts General Hospital (MGH) — aimed at identifying early digital diagnostic markers in amyotrophic lateral sclerosis (ALS).
The award, from ALS Finding a Cure and the ALS Association, is backing the development of the NeuroLens Digital Diagnostics program. A diverse and multidisciplinary research partnership, NeuroLens seeks to remotely monitor presymptomatic ALS gene carriers — individuals at a high genetic risk for developing the neurodegenerative disorder who are not yet showing any of its signs.
The overarching goal is to spot early signs and symptoms of ALS, ensuring patients receive a definite diagnosis and ALS treatment as soon as is possible, which has the potential to improve outcomes. On average, an ALS diagnosis now takes 12 to 18 months.
“We’re thrilled to launch the NeuroLens digital diagnostics initiative and the grassroots efforts to build and strengthen the ALS community and encourage collaboration across groups working toward the shared goal of finding early diagnosis of this devastating disease,” Indu Navar, EverythingALS founder, said in a press release.
“This open source organizing model for ALS could be transformational as we can share data and collaborate with thousands of researchers and AI engineers. This brings hope to the ALS community and their loved ones who are tackling enormous challenges and hoping for movement and momentum,” Navar added.
Seeking diagnostic markers to track ALS gene carriers, family members
The novel diagnostics program is a decentralized and open innovation platform to remotely and continuously monitor gene carriers and their blood relatives who are at high risk of developing the progressive disorder but don’t yet have symptoms.
Globally, the gene carriers and family members will be monitored digitally — no doctor visits are necessary — with the help of sensors that assess functional changes in daily activities such as climbing and walking, and in speech and cognition. Videos will be used to capture subtle facial changes that can accompany ALS development.
The scientists then will use data derived from this monitoring to try to identify early diagnostic markers.
Remote monitoring using digital sensors offers a solution to identify individuals around the world with early signs of ALS who could then be referred for evaluation by an ALS specialist. This work will have a very real impact and accelerate the research being conducted by our team at MGH and others.
The open innovation concept aims to spur progress among researchers, artificial intelligence engineers, and neurologists to find early digital diagnostic markers to promote early therapeutic intervention as well as family planning.
“A key barrier in early diagnosis for ALS is that at-risk individuals may be located far from specialized academic neurology centers and traveling for regular in-person examinations may be burdensome,” said Mark Garret, MD, director of DIALS and PREVENT ALS at MGH, two programs studying people with ALS-associated mutations.
“Remote monitoring using digital sensors offers a solution to identify individuals around the world with early signs of ALS who could then be referred for evaluation by an ALS specialist. This work will have a very real impact and accelerate the research being conducted by our team at MGH and others,” Garret added.
Scientists interested in participating in the initiative, or who seek more information, may send an email to [email protected].
EverythingALS is a citizen-led nonprofit research organization that seeks to transform ALS through artificial intelligence and machine learning. Founded in 2014 by philanthropist Leandro P. Rizzuto, ALS Finding a Cure supports scientific efforts to end ALS.