Muscular Dystrophy Association Launches Data Reporting and Visualization Platform for Neuromuscular Disease

  • Muscular dystrophy
  • Neuromuscular disease

The Muscular Dystrophy Association (MDA) has announced the availability of its new data sharing platform, the neuromuscular observational research (MOVR) visualization and reporting platform (VRP). MOVR-VRP represents a milestone in advancing neuromuscular disease research and improving patient care by providing data on clinical parameters across large cohorts to advance drug discovery and development for neuromuscular disorders. 

The platform includes deeply curated sets of data from neuromuscular disease cohorts to help researchers rapidly identify populations that meet specific clinical criteria, develop and refine hypotheses, and collaborate on clinical trial designs. The security, compliance, and collaboration components of the platform will make MOVR data increasingly accessible to the wider neuromuscular clinical and research communities. Targeted efforts will include training, fulfilling data requests, reviewing publications, encouraging peer-to-peer collaboration and publishing, as well as sharing learnings across multiple channels to drive awareness. MOVR data complies with privacy and HIPAA regulations and conforms with the FDA-required format for observational clinical studies.

"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," says MDA's president and chief executive officer, Lynn O'Connor Vos. "We are grateful to the MOVR participants who have agreed to make their data available for this purpose, and MDA Care Center staff, who have worked tirelessly to populate MOVR. 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."

The MDA partnered with DNAnexus, a leading cloud-based software as a service (SaaS) company serving the life science community, to develop the new MOVR-VRP, transforming raw MOVR data and transition it into the database where MDA Care Center clinicians and researchers will be able to analyze and visualize data across multiple sites to better understand disease progression and compare outcomes across therapeutic categories. 

"Extracting value from the data first requires a comprehensive data harmonization and ingestion strategy. DNAnexus has a successful track record in ingesting valuable datasets from UK Biobank, City of Hope, and now MOVR, working with a multitude of common data models such as OMOP, CDISC, and other data schemas to support each customer's unique use case," says Richard Daly, chief executive officer at DNAnexus. "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. We are proud to serve as the technology platform bringing together MDA researchers and their partners to advance cures for this collection of neuromuscular diseases."

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