OpenMOVR

Open Science Initiative for Neuromuscular Disease Research

MOVR is creating open source initiatives in software and eventually science — building transparent, community-driven tools that accelerate research and benefit everyone.

What We're Building

Open source tools and collaborative infrastructure for the research community

Open Source Software

Clinical data integration libraries, data processing pipelines, and research tools built transparently with the community.

Open Science

Transparent research processes, shared datasets, and collaborative frameworks that benefit the entire research ecosystem.

Community Collaboration

Bringing together researchers, developers, patients, and institutions under unified governance and shared goals.

Much of this is still being built out

We're in the early stages — validating MOVR 2.0, developing open source tools, and establishing the foundations for transparent, community-driven neuromuscular disease research.

Building on a Foundation of Trust

12 years of proven excellence in neuromuscular disease research

6,021
Participants
20,883
Clinical Visits
12
Years

Our Vision: Open Science, Eventually Open Data

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.

Current Focus (Q2 2026)

  • MOVR 2.0 operational validation
  • Open source tool development
  • Community building via GSoC
  • Transparent governance frameworks

What's Next

  • Clinical data integration libraries
  • Research data access tools
  • Collaborative research platform
  • AI-powered analytics & insights

Get Involved

Join us in building the future of neuromuscular disease research

For Developers

Join our Google Summer of Code program and help build open source tools for neuromuscular disease research.

Featured: MOVR DataHub Analytics — Python library for research data access.

GSoC Program

For Patients & Families

Be part of MOVR 2.0 Pilot — help co-create the next generation data platform.

Limited enrollment for DMD, SMA, and LGMD families.

Join Pilot

Stay Connected

Whether you're a researcher, developer, clinician, or someone passionate about advancing neuromuscular disease research.