MOVR Information for Researchers, Academia, and Clinicians

MOVR Objectives

1. Gain a better understanding of disease progression for specific NMDs
2. Collect data about genotype-phenotype correlations to allow for better prediction of disease progression based on genetic information
3. Collect longitudinal patient data that will allow the development of best management and treatment practices
4. Use data as a platform to develop and implement a clinical quality improvement program for MDA Care Centers across the country
5. Provide outcome-related information about MDA Care Centers for families seeking medical care
6. Establish a database of individuals eligible for clinical trials in NMDs to ease the burden of clinical trial recruitment and accelerate drug development

Research Frequently Asked Questions

How are researchers using MOVR Data?

Researchers are using MOVR Data to build predictive algorithms for disease progression, to identify discrepancies in care across different demographics, to assess clinical trial inclusion and exclusion criteria, and to identify eligible participants for clinical trials.

Can MOVR Data be used for regulatory submissions?

MOVR was created to support pre- and post-approval regulatory submissions. The MOVR team is working diligently to ensure that MOVR is compliant with the FDA draft guidance on assessing registries as a source for real-world data. Additional information about how MOVR is preparing for regulatory submissions is available upon request.

How is MOVR Data accessed by researchers?

MOVR Data can be delivered in a variety of ways:

1. Data Extract – MOVR team provides a data extract or data cut only for regulatory submissions. Data can be in the raw data format or CDISC transformed, which is the standard format for regulatory submissions.
2. MOVR Visualization and Reporting Platform – MOVR team grants access to the MOVR VRP, which is a powerful platform that allows you to easily create ‘cohorts’ by filtering through different data elements such as disease type, medication usage, age, etc.
3. In House Analysis – MOVR team performs analyses for you and provides a report detailing the results of these analyses.
4. Clinical Trial Feasibility Analysis – MOVR team uses the proposed inclusion and exclusion criteria for your clinical trial to identify the number of participants who may be eligible to participate. During this analysis, each inclusion and exclusion criterion is individually assessed to see it affects the number of eligible participants.
5. Clinical Trial Matching – MOVR team identifies eligible participants using your clinical trial’s inclusion and exclusion criteria. Clinicians at MOVR sites are provided a list of eligible participants and information about the clinical trial. The clinicians will then confirm eligibility and provide the trial information to the participant.

How do I request access to MOVR Data?

Researchers interested in receiving access to the MOVR Data Hub for observational research projects must follow the necessary steps:

MOVR Research Advisory Committee

James Berry, MD, MPH

Harvard University
Massachusetts General Hospital
Director, MGH Neurological Clinical Research Institute (NCRI) Chief, Division of ALS and Motor Neuron Diseases

Barry Byrne, MD, PhD

University of Florida
Associate Chair of Pediatrics

John Day, MD, PhD

Stanford University Medical Center
Professor of Neurology, of Pediatrics (Genetics) and, By Courtesy, of Pathology

Rod Howell, MD

University of Miami
Professor and Chairman of Pediatrics Emeritus
Miller School of Medicine

Monkol Lek, PhD

Yale University
Assistant Professor

Nicholas Maragakis, MD

Johns Hopkins Medicine
Director, ALS Center for Cell Therapy and Regeneration Research Professor of Neurology

Sabrina Paganoni, MD, PhD

Harvard University
Massachusetts General Hospital
Co-Director, MGH Neurological Clinical Research Institute (NCRI)
Assistant Professor

Eric Schultz

Ocean Genomics, Inc.
Co-Founder, Strategic Advisor

Contact MOVR: MDAMOVR@mdausa.org