Article
Centralizing Neuromuscular Disease Data With the MDA MOVR Database
Author(s):
Sharon Hesterlee, PhD, the executive vice president and chief research officer at MDA spoke to the benefits of its new partnership with DNAnexus.
Sharon Hesterlee, PhD
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.
The MDA developed the MOVR hub in 2018 to collect data from MDA care centers around the country but was not easily accessible to doctors and required a third party for mediation. The new platform seeks to allow clinicians to easily access and analyze aggregated data and trends for multiple neuromuscular diseases.
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. These data could later be used in clinical trials and research studies, normally difficult tasks with the dearth of information on rare diseases.
To learn more about the MOVR database and the value of the MDA’s new visualization platform, NeurologyLive spoke with Sharon Hesterlee, PhD, executive vice president and chief research officer, MDA.
NeurologyLive: What prompted the development of this 2 years later, after the initial MOVR data hub came out?
Sharon Hesterlee, PhD: We'd always planned to do it, we've just been rolling out the features of the data hub. We have this robust data system in the background in which we can collect, monitor, and extract data, but it's not an easy access user interface; we have to work with a third party to extract that data. What the visualization platform allows us to do is have direct access to the to the data. We worked with DNA Nexus on the visualization platform, and it's a really nice interface because it allows you to sort of pull up different tabs and create searches and narrow your searches and compare data in different ways and is very user friendly. The goal is to make the data more accessible for both the people who are putting data in and others who want access to the aggregate data.
It's basically making it easier for clinicians to use and interpret this data?
Yes, that’s the key thing—they won't have to go through any third party, they have direct access to it and can manage all of their own data. If they want access to the aggregate data, they can put in a request to our data use committee, and we can help make that de-identified aggregate data available to them. In rare disease, every amount of data that you can collect is very valuable. We collect our data at point of care, which is another thing that makes our database different. Every time a consenting participant comes to visit an MDA Care Center, that's documented and gets logged into the registry. It's just another opportunity to collect data. And again, it's so valuable in rare disease that we think it'll be very good resource to add to existing collections and data.
What successes and further developments do you foresee with the connectivity of information that the VRP pioneers?
We definitely have plans to develop the database further. We have some publications planned that should come out early next year that describe how the database is set up and put together and is focused on Duchenne muscular dystrophy, ALS, and spinal muscular atrophy. In those three diseases, we can answer a lot of questions, for example, about health disparities. And in Duchenne, we've seen geographic regions where it's clear that Duchenne is being diagnosed later than other areas, so you can sort of pinpoint areas where you have health disparities and start to get some comparative data. We're also collecting longitudinal data, and by next year, a platform will be able to display that longevity data as well. We also want to look at outcomes research. Even now, we're using it also for things like identifying cohorts for clinical trials, but I think our eventual goal is to get to outcomes research so that we can look at different treatment strategies and regimens and see where we're getting better outcomes.
Transcript edited for clarity.
