The Muscular Dystrophy Association (MDA) announced the launch of the neuroMuscular ObserVational Research (MOVR) Visualization and Reporting Platform (VRP). The new platform represents a monumental leap in advancing neuromuscular disease research and improving patient care. MDA partnered with DNAnexus, the leading cloud-based SaaS company serving the life science community, to unleash the power of its MOVR Data Hub and develop the MOVR VRP to advance drug discovery and development.
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 dataand accelerate research and treatment progress,? says MDA?s President & CEO, 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.?
MDA partnered with DNAnexus to transform raw MOVR data and incorporate it into the MOVR VRP where MDA Care Center clinicians and researchers can analyze and visualize data across multiple Care Center sites in order to better understand disease progression and compare outcomes across therapeutic categories.
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 now complies with privacy and HIPAA regulations and conforms with the FDA-required format for observational clinical studies.
?From my experience with the MOVR VRP, I can say that the interface is very intuitive and customizable,? says Jeffrey M. Statland, MD, assistant professor of neurology and director of the MDA Care Center at the University of Kansas Medical Center, who beta tested the new platform. ?Now that it is going live, this innovative platform will prove an invaluable tool for MDA Care Center clinicians and researchers across the country to visualize all sites? aggregate data, and assist tremendously in our making therapeutic decisions and structuring clinical trials.?
In addition to helping improve clinical care, the MOVR VRP allows for in-depth analysis of clinical parameters across large cohorts of neuromuscular patients. This will enable correlative analyses that may stimulate new drug, biologics and gene therapy discoveries. Exploration of these deeply curated neuromuscular disease cohorts in the MOVR VRP also enables clinical researchers to rapidly identify populations that meet specific clinical criteria, develop and refine hypotheses, and collaborate on clinical trial designs.
?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, CEO 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.?
The MOVR datahub, developed in collaboration with IQVIA, is a HIPAA-compliant, CDISC-formatted registry operated through participating MDA Care Centers that collects at the point of care longitudinal data in seven disease indications: amyotrophic lateral sclerosis, spinal muscular atrophy, Duchenne muscular dystrophy, Becker muscular dystrophy, facioscapulohumeral muscular dystrophy, limb-girdle muscular dystrophy and Pompe disease.
About the Muscular Dystrophy Association
For 70 years, the Muscular Dystrophy Association (MDA) has been committed to transforming the lives of people living with muscular dystrophy, ALS, and related neuromuscular diseases. We do this through innovations in science and innovations in care. As the largest source of funding for neuromuscular disease research outside of the federal government, MDA has committed more than $1 billion since our inception to accelerate the discovery of therapies and cures. Research we have supported is directly linked to life-changing therapies across multiple neuromuscular diseases. MDA’s MOVR is the first and only data hub that aggregates clinical, genetic, and patient-reported data for multiple neuromuscular diseases to improve health outcomes and accelerate drug development. MDA supports the largest network of multidisciplinary clinics providing best-in-class care at more than 150 of the nation’s top medical institutions. Our Resource Center serves the community with one-on-one specialized support, and we offer educational conferences, events, and materials for families and healthcare providers. MDA Advocacy supports equal access for our community, and each year thousands of children and young adults learn vital life skills and gain independence at summer camp and through recreational programs, at no cost to families. During the COVID-19 pandemic, MDA continues to produce virtual events and programming to support our community when in-person events and activities are not
DNAnexus is the leading cloud-based SaaS company serving the global life science community. DNAnexus? health informatics platform serves customers across a spectrum of industries – government, biopharmaceutical, clinical diagnostics, healthcare, and academic research in 33 countries with compliant protection of data, privacy, and intellectual property. The platform provides a secure and collaborative environment where genomics, multi-omics, and real world data can be combined with clinical data at scale, providing new insights that can lead to improved diagnostics, new targeted therapies and better patient care.