Remote Digital Technology Research Study for ALS Seeking Participants

The MDA MOVR program has paired with Mitsubishi Tanabe Pharma America, Inc. (MTPA) to collaborate on a remote observational research study focusing on Amyotrophic Lateral Sclerosis (ALS). The newly developed research study, ALS Go-Digital, is designed to pair remotely collected digital data with longitudinal clinical data of participants living with ALS. The study began recruiting participants in September 2023 and is still actively seeking participants.

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.

“We are excited to be collaborating with Mitsubishi Tanabe Pharma America on this important study,” said Sharon Hesterlee, Ph.D., Chief Research Officer, MDA. “Repurposing the data collected by MOVR during regular clinic visits lays the foundation to validate and increase acceptance of outcomes for fully remote, decentralized ALS clinical trials, which require little to no travel time on the part of participants. This could save countless hours and valuable resources which participants must spend at research sites, when they could be spending time with loved ones.”

“MTPA has supported MDA in their work to empower those living with ALS for several years and we’re proud to continue this work by collaborating on this study,” said Yasutoshi Kawakami, President, MTPA. “Patients are at the forefront of everything we do, and I look forward learning more about how remote data can help support those living with ALS and their caregivers.”

Participants must be enrolled in MOVR to be eligible for this study. Click here for more information and registration.