MOVR Data Hub Overview

Neuromuscular Observational Research (MOVR) Data Hub Overview

MDA’s mission is to empower the people we serve to live longer, more independent lives. MDA launched MOVR to help achieve this mission. About 10 years ago, MDA recognized that there was a significant data shortage in the neuromuscular disease space and started crafting strategic approaches to accelerate data collection and its use by researchers, clinicians, and drug developers. One strategy that was identified was to leverage the MDA Care Center Network. Capturing these data across the MDA Care Center Network is providing valuable knowledge on disease progression for drug development and will serve as a rich source of real-world data in regulatory submissions and post-approval processes.

Why does MOVR only include seven indications right now?

The seven neuromuscular diseases currently included in MOVR (ALS, BMD, DMD, FSHD, LGMD, Pompe disease, and SMA) were chosen because there are multiple experimental therapies in development for them, national working groups have identified and standardized the data elements that are important to collect in clinical trials, and formal “standards of care” for individuals living with these diseases have been defined. Importantly, this offers a unique opportunity to measure adherence to these care standards and their impact on individual health outcomes. MDA is committed to expanding the number of indications captured by MOVR.

How are data entered into MOVR?

Thirty-one core data elements are captured across four electronic case report forms (eCRFs) – Demographics eCRF, Diagnosis eCRF, Encounter eCRF, and Discontinuation eCRF. Additional unique data elements are captured for each indication. Data are entered into the eCRFs from the electronic health record by clinical research staff at participating MDA Care Centers.

Why did MDA create MOVR?

Diagnostic and therapeutic advances are transforming the landscape of neuromuscular medicine, with breakthroughs in neuromuscular disease research and care happening at a much faster pace than ever before. As more therapies become available, they will begin to shift in makeup from purely supportive treatments to those that modify disease at the molecular level.

In order to make upcoming therapies available to all individuals living with neuromuscular diseases, there are challenges that must be overcome.

MOVR aims to overcome these challenges by capturing clinical and genetic data from individuals living with a neuromuscular disease who receive care at an institution within the MDA Care Center Network and who agree to share their anonymized information. This large dataset will provide researchers with insights into how drugs and other treatments affect outcomes, how clinical trials could be better designed, and how neuromuscular diseases affect individuals the same or differently. It will ensure that clinicians can quickly identify patients who may benefit from new therapies or who may want to participate in a clinical trial.

MOVR Publications, Presentations and Real-World Guidance

• The Muscular Dystrophy Association's neuroMuscular ObserVational Research Data Hub (MOVR): Design, Methods, and Initial Observations
• MDA's MOVR Data Hub Captures Longitudinal Clinical Data Across 7 Neuromuscular Diseases to Evaluate Current Care Practices and the Impact of FDA Approved Therapies
• MDA's MOVR Data Hub provides insights into adoption of approved therapies for neuromuscular disease
• Evaluating MDA's MOVR Data Hub as a Source for Real-World Data