Sharon Hesterlee, PhD: Addressing The Challenge of Gathering Data on Rare Diseases


The executive VP and chief research officer of MDA also discussed future plans on making MOVR and its platform accessible to centers outside of the MDA network.

“It'll allow us to talk to other datasets. We're all going to speak the same language at some level. So, we're hoping to be able to interact with existing datasets and really maximize what's out there in these rare disease areas.”

The Muscular Dystrophy Association (MDA) recently partnered with DNAnexus to create a visual reporting platform (VRP) for their neuroMuscular ObserVational Research (MOVR) database. 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 and chief research officer, MDA, talked to NeurologyLive about some of the information MOVR has been collecting, such as comparative and longitudinal data. With the use of the VRP, viewing trends and associations is greatly simplified. Hesterlee noted the challenges in gathering information about rare diseases, many silos of which may exist independently of one another. The MOVR database hopes to connect many of these silos of information to be able to assemble a clear picture of these rare diseases.

Hesterlee also discussed the MDA’s future plans for MOVR and the VRP. 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.

Muscular Dystrophy Association Launches MOVR Visualization and Reporting Platform to Improve Patient Care and Accelerate Drug Discovery. News release. Muscular Dystrophy Association. October 28, 2020. Accessed November 9, 2020.
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