Director, Registry Data Operations and Partner Delivery

At MDA, we believe our biggest asset is our combination of different backgrounds, cultures, and disciplines united to form one high-performing team. By bringing together people from different backgrounds, perspectives, and generations, we ensure that we all have access to the opportunities, relationships, and resources necessary to learn, grow and thrive. What we do starts with our people and the neuromuscular disease community we serve.

As America’s largest voluntary health organization covering research, healthcare, and advocacy for people with neuromuscular diseases, MDA is leading the way in improving the quality of life for those living with muscular dystrophy, ALS, spinal muscular atrophy, and dozens of related disorders – many first discovered and diagnosed by MDA supported scientists and clinicians.

At MDA, we believe our biggest asset is our combination of different backgrounds, cultures, and disciplines united to form one high-performing team. By bringing together people from different backgrounds, perspectives, and generations, we ensure that we all have access to the opportunities, relationships, and resources necessary to learn, grow and thrive. What we do starts with our people and the neuromuscular disease community we serve.

As America’s largest voluntary health organization covering research, healthcare, and advocacy for people with neuromuscular diseases, MDA is leading the way in improving the quality of life for those living with muscular dystrophy, ALS, spinal muscular atrophy, and dozens of related disorders – many first discovered and diagnosed by MDA supported scientists and clinicians.

The Research Department’s mission is to advance therapy, care, and education for neuromuscular disorders through research grants, investments, and internal projects; professional education and scientific meetings; and the utility of patient data to improve clinical care and support drug development. Team members collaborate internally and externally to meet strategic objectives and clear annual goals.

The neuro

Muscular Obser Vational Research (MOVR) Registry is MDA’s real-world data platform for neuromuscular disease. MDA is in the process of evolving MOVR into a decentralized real-world data platform that integrates electronic medical records (EMRs) to support neuromuscular disease research, care, and therapeutic development, with participants enrolling and consenting directly with MDA. MDA will work with biopharmaceutical partners, clinicians, and researchers to use data collected through the platform to advance understanding of neuromuscular diseases, inform clinical care, and support research and therapeutic development.

The Director, Registry Data Operations and Partner Delivery is a senior member of the MOVR team within the Research Department and reports to the Vice President, Real-World Evidence and Data Strategy. This position oversees MDA’s operational commitments to biopharmaceutical and technology partners, manages collaborations with researchers, maintains the day-to-day relationship with the technology platform partner, and coordinates delivery across MOVR’s technical work streams.

The Director facilitates clinical, data integration, and disease-specific working groups; maintains registry documentation and decision records; and oversees data quality review and remediation. This individual balances contractual deliverables and timelines with MDA’s mission and its obligations to participants, identifying and escalating risks, data limitations, and potential conflicts with participant consent before commitments are made.

Working closely with the Vice President and MDA’s scientific, clinical, and technology…