MOVR: Neuromuscular Observational Research

MOVR Update: MOVR 2.0 is Coming!

We’re evolving! After over a decade of collecting critical data on neuromuscular diseases, the original MOVR Data Hub has officially closed. This marks an exciting transition to the next phase: MOVR 2.0: A new generation platform.

What You Need to Know:

• The original MOVR Data Hub is now closed (as of April 1, 2025)
• Participant enrollment and data collection through the original study has ended.
• We are launching the next phase of MOVR — which is a new generation platform that is a more advanced, tech-forward research data solution.

Were you part of MOVR?

If you were previously enrolled, your participation has concluded, and your consent has been withdrawn. But we’d love for you to join us in the next chapter! Learn more about our next phase here: MOVR Next Gen Data Platform (insert tab link here)

Enrollment Coming Soon

Stay tuned for exciting updates on how to join MOVR 2.0: A new generation platform! Soon, you'll be able to enroll directly through our online platform. Want to be first in line? Send us an email at MDAMOVR@mdausa.org to let the MOVR team know you're interested—we’ll keep you posted as soon as registration opens.

Our Vision: Open Science

MOVR is evolving from a traditional registry into an open science initiative — creating transparent, community-driven software tools that accelerate neuromuscular disease research. We're building the infrastructure for modern research: FHIR-based EMR integration, automated data processing, and collaborative frameworks that bring researchers, patients, and institutions together. Eventually, we envision a future where research data flows openly and transparently — but we're taking deliberate steps to get there, with patient trust and data stewardship as our foundation. There is an open source community supporting MOVR. Learn more here.

Questions?

Email us at MDAMOVR@mdausa.org and we’d be happy to help.

Thank you for supporting neuromuscular research. We’re excited for what’s ahead—and we hope you’ll be part of it.

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Quick Links:

• MOVR Legacy
• MOVR Next Gen Data Platform
• Frequently Asked Questions
• MOVR Legacy Data Request Form