About Us

Muscular Dystrophy Association Announces Collaboration with Mitsubishi Tanabe Pharma America for Remote Digital Technology Research Study for Amyotrophic Lateral Sclerosis (ALS)

NEW YORK, Monday, October 30, 2023 – Muscular Dystrophy Association (MDA) and Mitsubishi Tanabe Pharma America, Inc. (MTPA) today 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.

“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.”

About ALS

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, is a disease of the parts of the nervous system that control voluntary muscle movement. In ALS, motor neurons (nerve cells that control muscle cells) are gradually lost. As these motor neurons are lost, the muscles they control become weak and then nonfunctional, thus leading to muscle weakness, disability, and eventually death. ALS is the most common form of motor neuron disease. The exact cause for ALS is still unknown.

About Muscular Dystrophy Association

Muscular Dystrophy Association (MDA) is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and related neuromuscular diseases. For over 70 years, MDA has led the way in accelerating research, advancing care, and advocating for the support of our families. MDA's mission is to empower the people we serve to live longer, more independent lives. To learn more visit mda.org and follow MDA on Instagram, Facebook, X, Threads, TikTok, LinkedIn, and YouTube.

About MDA’s Neuromuscular Observational Research (MOVR) Data Hub:

MOVR begun in 2013 to address the significant data shortage in the neuromuscular disease space. Today, MOVR captures tens of thousands of clinical visits, translating to hundreds of thousands of data points. With over 5,000 participants tracked for up to 10 years, MOVR enables access to a rich source of clinically entered observational data across seven neuromuscular disease indications critical to the rapidly rising advancements in data science. MOVR is a continuously expanding initiative aiming to cover more participants, more clinical sites, more standards of care, and more indications. MOVR informs disease understanding, guides critical trial design, accelerates drug development for neuromuscular disease, and more. MOVR is HIPAA and FAIR data principles compliant. https://www.mda.org/science/movr

About Mitsubishi Tanabe Pharma America, Inc.

Based in Jersey City, N.J., Mitsubishi Tanabe Pharma America, Inc. (MTPA) is a wholly-owned subsidiary of Mitsubishi Tanabe Pharma Corporation (MTPC). It was established by MTPC to develop and advance our pipeline as well as commercialize approved pharmaceutical products in North America. For more information, please visit www.mt-pharma-america.com or follow us on Twitter, Facebook and LinkedIn.

About Mitsubishi Tanabe Pharma Corporation

Mitsubishi Tanabe Pharma Corporation (MTPC), the pharma arm of Mitsubishi Chemical Group (MCG), is one of the oldest pharmaceutical companies in the world, founded in 1678. MTPC is headquartered in Doshomachi, Osaka, the birthplace of Japan’s pharmaceutical industry. MCG has positioned health care as its strategic focus in its management policy, “Forging the future”. MTPC sets the MISSION of “Creating hope for all facing illness”. To that end, MTPC is working on the disease areas of central nervous system, immuno-inflammation, diabetes and kidney, and cancer. MTPC is focusing on “precision medicine” to provide drugs with high treatment satisfaction and additionally working to develop “around the pill solutions” to address specific patient concerns based on therapeutic medicine, including prevention of diseases, pre-symptomatic disease care, prevention of aggravation and prognosis. For more information, go to https://www.mt-pharma.co.jp/e/.