Muscular Dystrophy Association (MDA) and Mitsubishi Tanabe Pharma America, Inc. (MTPA) announced their collaboration for a remote observational research study focusing on amyotrophic lateral sclerosis (ALS). The newly developed research study, ALS Go-Digital, is designed to pair digital data collected remotely with longitudinal clinical data. The study began recruiting participants in September 2023.
ALS Go-Digital is a collaborative, decentralized research study that aims to assess the feasibility of collecting health data from remote participants via digital devices and smartphones to measure ALS progression over one year. The remote data will be paired with clinical data obtained from the MDA’s NeuroMuscular ObserVational Research (MOVR) database, which collects data from a patient’s medical records during routine clinic visits at MDA Care Centers. Powered by the network of MDA Care Centers, MOVR is the first-of-its-kind data hub which aggregates high-quality clinical data for multiple neuromuscular diseases to improve health outcomes and accelerate drug development.
The study will recruit 75 individuals from the 2,000 ALS patients currently enrolled in MOVR who contribute data during their routine care visits. Participants will be remotely monitored over a period of one year using data collected from Fitbit smartwatches for monitoring daytime physical activity and sleep patterns, a proprietary smartphone app, ALS HANDs, developed by MTPA for assessing fine motor function of the hands and fingers, and an app-based electronic Clinical Outcomes Assessment (eCOA) platform for tracking ALS symptoms using self-reported, gold-standard ALS assessments.
The study will help determine which method of data collection may be the most useful in tracking the progression of ALS and how the results compare to more commonly used assessments made by healthcare professionals in the clinic.
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