Although FTD and amyotrophic lateral sclerosis (ALS) have long been considered distinct disorders, experts now recognize that the two disorders have much in common. Both can be caused by a defect in the c9orf72 gene and trigger similar pathological changes to the brain. In addition, symptoms of both disorders can occur in the same person, making participation in clinical trials – or even traveling to a doctor’s office – especially burdensome.

Digital technologies such as wearable sensors or smartphone and tablet-based apps enabling doctors and researchers to monitor FTD and ALS symptoms at home would allow more frequent and accurate measurements and permit more people to access clinical trials. To advance the development of such technologies, AFTD partnered with the ALS Association to offer a new grant program, Digital Assessment Tools for FTD and ALS, and is now proud to announce two awards supported through this funding opportunity.

Adam Staffaroni, PhD, an associate professor at the UCSF memory and Aging Center, received a Digital Assessment Tools for FTD and ALS award for his proposal, “Harmonizing remote smartphone assessments of cognition, behavior, and motor functioning across the spectrum of FTD and ALS.” Dr. Staffaroni and collaborators at UCSF, Columbia, Massachusetts General Hospital, and Washington University at St. Louis will evaluate a smartphone app developed for use in the ALLFTD natural history study in participants enrolled in the PREVENT ALS study of genetic ALS. The combined dataset will allow the team to confirm the reliability and validity of the app in ALS and to determine the benefit of remote data collection for early detection and monitoring disease progression in people with disease-associated gene variants.

Ashkan Vaziri, PhD, who heads the digital technology company BioSensics, was also awarded a Digital Assessment Tools for FTD and ALS grant for his proposal, “Digital measurements of motor and voice functions in FTD.” Dr. Vaziri will collaborate with AFTD Medical Advisory Council chair-elect Chiadi Onyike, MD at Johns Hopkins to test Biosensics’s patented PAMSys wearable sensor and the accompanying data platform, BioDigital Home, in people with frontotemporal dementia and corticobasal syndrome. The PAMSys – BioDigital Home system is already undergoing testing in a separate study in PSP and ALS. Dr. Vaziri and the BioSensics team plan to merge the data from the two studies to identify the digital measures best suited to monitoring disease progression in FTD and ALS.