MOVR 2.0
LatestWe'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.
What You Need to Know
- The original MOVR Data Hub is now closed
- Participant enrollment and data collection through the original study has ended
- We are launching MOVR 2.0 - a new generation platform
- We're running operational validation pilots leading to a Q2 2026 go-live decision
Were you part of MOVR?
If you were previously enrolled, your participation has concluded. But we'd love for you to join us in the next chapter!
Current Status: Validation Phase
We're running a small precursor pilot program to operationally validate the safest and most effective approach.
We Are Enrolling
Yes, we have active but capped enrollment in our validation pilot.
Why Careful Approach?
Registries are expensive and critical to research. We need to ensure sustainability before full-scale launch.
Introducing OpenMOVR
As part of MOVR 2.0, we're launching a new governance framework that will democratize registry research.
What OpenMOVR Will Provide
- Frequent updates: Regular posts on publications and research progress
- SDK toolkits: Developer tools for the research community
- Collaboration opportunities: Ways for community members to get involved
- Cross-PAG collaboration: Working with other patient advocacy groups
Want to Get Involved?
Multiple Ways to Participate
- Join the pilot: Email us at MDAMOVR@mdausa.org
- Stay informed: We'll keep you posted on Q2 2026 go-live decision
- Community involvement: OpenMOVR will provide opportunities for research collaboration
MOVR 2.0: The Vision
A revolutionary automated registry platform. We're moving from manual data entry to automated EMR integration, building open source tools, and creating a collaborative platform that makes neuromuscular disease research faster, easier, and more accessible.
Why This Matters
Current Challenges
- Manual data entry is time-intensive
- Site burden affects clinical workflow
- Limited scale restricts growth
- Siloed access slows collaboration
MOVR 2.0 Solution
- Automated EMR integration
- Seamless workflows
- Scalable platform
- Open source tools
Technology Vision
Automated Data
EMR Integration, FHIR Standards, Real-time Processing, Quality Assurance
Developer Platform
APIs & SDKs, Python Library, Documentation, Open Source
Collaboration
Streamlined Access, Global Network, Cross-Study Integration
Current Phase: Operational Validation
We're not rushing into full deployment. Instead, we're taking a careful, methodical approach.
What We're Testing
- Technology feasibility
- Data quality validation
- Site adoption
- Sustainability models
Why This Approach
- Registries are expensive
- Technology evolves rapidly
- Research continuity matters
- Community impact is significant
The Q2 2026 Decision Point
Success Criteria
- Technical validation
- Data quality maintained
- Site satisfaction
- Financial sustainability
If We Say "Go"
- Full platform launch
- Open enrollment
- Community tools
- Global expansion
What was the MOVR DataHub?
The Neuromuscular Observational Research (MOVR) Data Hub was MDA's flagship research registry that ran from 2019 to 2025. It pioneered data collection strategies to accelerate research for neuromuscular diseases.
Note: MOVR DataHub is distinct from its predecessor, the United States Neuromuscular Disease Registry (USNDR), which operated from 2013-2018.
Disease Coverage
ALS | DMD | SMA | BMD | LGMD | FSHD | Pompe Disease
MOVR DataHub vs USNDR
USNDR (2013-2018)
The foundational predecessor study. Separate IRB protocol and participant cohort.
26 Sites | 4 Diseases
MOVR DataHub (2019-2025)
Expanded registry with new protocols and updated consent.
60+ Sites | 7 Diseases | 3,570 Participants
Enrollment by Disease
| Disease | Participants | Encounters | Avg/Participant |
|---|---|---|---|
| ALS | 1,690 | 4,921 | 2.98 |
| DMD | 727 | 2,414 | 3.51 |
| SMA | 545 | 1,790 | 3.42 |
| LGMD | 222 | 502 | 2.39 |
| FSHD | 188 | 388 | 2.11 |
| BMD | 158 | 359 | 2.39 |
| Pompe | 40 | 94 | 2.54 |
| TOTAL | 3,570 | 11,501 | 3.22 |
Final data as of April 2025, when the MOVR DataHub Study was successfully completed.
Frequently Asked Questions
About MOVR 2.0
MOVR 2.0 is the next generation neuromuscular disease registry platform that moves from manual data entry to automated EMR integration while maintaining gold standard data quality and building open source tools for the entire research community.
MOVR 2.0 features:
- Automated data collection through EMR integration
- Real-time processing and validation
- Open source tools for the research community
- Reduced site burden while maintaining data quality
We're in operational validation through Q2 2026. The full platform launch depends on the success of this validation phase and sustainable funding arrangements.
For Previous MOVR Participants
Your participation has concluded, and your consent has been withdrawn as planned. The data you contributed continues to support neuromuscular disease research through approved studies.
Yes! Request your data through our Legacy Data Request Form.
Absolutely! Email MDAMOVR@mdausa.org to express your interest.
For Researchers
Legacy MOVR data (USNDR 2013-2018 and MOVR 2019-2025) remains available for approved research studies. Contact MDAMOVR@mdausa.org.
Yes! A core principle of MOVR 2.0 is building open source tools that benefit the entire research community.
Still Have Questions?
Contact us at MDAMOVR@mdausa.org