MDA Launches Tool to Make Clinical Data More Accessible to Researchers

The Muscular Dystrophy Association (MDA) and DNAnexus have introduced a digital platform to improve patient care and accelerate treatment discovery for muscular dystrophy and other neuromuscular disorders.

The neuroMuscular ObserVational Research (MOVR) Visualization and Reporting Platform (VRP) provides easy-to-use tools for in-depth analysis of large neuromuscular patient data from across 37 MDA Care Centers. Researchers and clinicians accessing these data can quickly identify specific patient populations, develop and refine hypotheses, and collaborate on clinical trial designs.

Containing the raw data that the VRP stores, the MOVR hub collects clinical information from seven neuromuscular disorders: Duchenne muscular dystrophy, Becker muscular dystrophy, facioscapulohumeral muscular dystrophy, limb-girdle muscular dystrophy, amyotrophic lateral sclerosis, spinal muscular atrophy, and Pompe disease.

“The MOVR database, combined with the visualization and analysis platform from DNAnexus, allows us to make the most of this data in a way that really brings it to life to aid in developing new therapeutics,” Lynn O’Connor Vos, MDA president and CEO, said in a press release.

The MDA worked with DNAnexus to make the MOVR VRP easy for researchers to explore. The cloud-based data analysis and management company has experience working with data from the U.K. Biobank and City of Hope.

“From my experience with the MOVR VRP, I can say that the interface is very intuitive and customizable,” said Jeffrey M. Statland, MD, director of the MDA Care Center at the University of Kansas Medical Center, who tested the new platform.

MOVR data complies with HIPAA privacy regulations, and conforms to the U.S. Food and Drug Administration‘s format for observational clinical studies. Beyond protecting patient information, these security and compliance measures help make the MOVR data more accessible to the wider neuromuscular clinical and research communities.

Collectively, targeted efforts involving training, meeting data requests, reviewing publications, encouraging partnership and publishing, and widely sharing findings to boost awareness should contribute to the platform’s broad accessibility.

“MDA understands the importance of collaboration in fueling scientific advancements and is leading the development of new approaches to revolutionize the way neuromuscular disease research is practiced,” said Richard Daly, CEO of DNAnexus.

“MDA has doubled down on efforts to ensure those able to directly impact the lives of people living with neuromuscular disease have state-of-the-art tools to share data and accelerate research and treatment progress,” added Vos.