The executive VP and chief research officer of MDA spoke about how the new visualization reporting platform will also allow for easy recruitment of data to be used in future clinical trials and research studies.
"It's great if physicians are able to explain to patients the value of being able to use their data, and that their data, when viewed in this aggregate database, is not identifiable, but that it really helps with care and research to be able to pull those datasets together."
The Muscular Dystrophy Association (MDA) has partnered with DNA nexus to create a visual reporting platform (VRP) for their neuroMuscular ObserVational Research (MOVR) database. While MOVR launched in 2018, the data was not easily accessible and a third party was needed to be able to navigate the data for clinicians to access. As part of the MDA's long term plan, the MOVR VRP allows for all care centers in the MDA network to easily access, contribute, and analyze aggregate patient data on 7 focused neuromuscular diseases.
Sharon Hesterlee, PhD, Executive Vice President, Chief Research Officer, MDA, talked to NeurologyLive about how the new VRP creates a simple and effective interface for doctors to interact with this data, and the benefit for doctors and patients alike to allow patient data to be collected in databases like MOVR. While use of MOVR is currently only available to care centers in the MDA network, other centers may be able to access the data in the future on a lower-priority basis. Hesterlee encourages centers in the MDA network to apply for access to the MOVR database.
This connectivity of information is especially helpful in rare disease, as consenting patients of these care centers will contribute their data to MOVR at point-of-care. This data could later be used in clinical trials and research studies, difficult tasks with the dearth of information on rare diseases.