Director, Registry Data Operations and Partner Delivery

Description

MDA Overview:

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.

Department Overview:

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 neuroMuscular ObserVational 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.

Position Description:

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 workstreams.

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 collaborators, the Director translates program priorities into operational plans and platform requirements. This role ensures that registry activities and partner projects are coordinated, appropriately documented, and delivered to agreed standards and timelines, while supporting MOVR’s continued development as a resource for the neuromuscular disease community.

They will develop, write, and execute computational scripts using programming languages such as Python, R, or SQL to analyze structured data extracted from electronic medical records (EMRs). Perform data cleaning, processing, and statistical analyses to support MDA-led research initiatives, scientific publications, and collaborative projects with biopharmaceutical industry partners.

Responsibilities:

• Manage MDA’s operational commitments under biopharmaceutical and technology partner agreements, including deliverables, timelines, and statements of work.
• Track contractual deliverables, identify scope changes and potential delivery risks, and escalate issues promptly.
• Support the Vice President in scoping new partner projects and translating agreed commitments into delivery plans and timelines.
• Prepare and maintain partner-facing status updates and deliverable reports.
• Serve as the primary day-to-day contact for the technology platform partner and represent MDA in operational discussions as delegated by the Vice President.
• Manage collaborations with researchers and other patient advocacy organizations to facilitate the use of MOVR data for research, clinical care, and therapeutic development, including coordinating project scope, data access, and deliverables in accordance with participant consent and MDA’s data governance requirements.
• Monitor platform partner deliverables, service levels, and scope against the contract and statement of work.
• Coordinate recurring partner delivery meetings and maintain status reports and issue, risk, and action logs.
• Direct the rollout of new data domains, surveys, and disease-specific modules with the platform partner and internal teams.
• Manage MOVR technical project plans, including scope, sequencing, dependencies, critical paths, and committed delivery dates.
• Translate program needs into actionable platform requirements and verify that completed work meets those requirements.
• Maintain the risk and issue register, coordinate resolution, and monitor actions through closure.
• Maintain decision records across partner, vendor, and governance meetings, including documented outcomes, rationale, commitments, action owners, and follow-up.
• Keep project plans, timelines, dependencies, and unresolved decisions current and visible to leadership.
• Organize and facilitate MOVR clinical, data integration, and disease-specific working groups, including agendas, documented recommendations, and follow-through.
• Maintain the data model and data dictionary as controlled documents with versioning and change control, supporting scientific review and approval by the Vice President or designated governance lead.
• Develop and maintain registry standard operating procedures (SOPs) and workflows.
• Support Institutional Review Board (IRB) operational activities and applicable privacy and compliance requirements.
• Review partner requests, data releases, and new data collection against participant consent; identify and escalate requests that exceed consent before commitments are made.
• Establish and oversee data quality review standards for completeness, consistency, and fitness for intended use.
• Coordinate data quality remediation with the platform partner and verify that corrective actions are completed.
• Communicate data limitations and gaps transparently to leadership and partners.

Salary Range: This position's salary range is $100,000-$110,000.

Location: This is a remote position with occasional travel requirements.

Qualifications:

Required qualifications

• Bachelor’s degree in engineering, data science, health informatics, life sciences, public health, or a related field.
• Five or more years of experience in health data, clinical research, digital health, or real-world data, including responsibility for a workstream. Candidates with an advanced degree may qualify with four or more years of relevant experience.
• Experience running descriptive analyses using R, Python, SQL, SAS or a similar tool.
• Demonstrated ability to learn unfamiliar technical or regulatory domains quickly and apply sound judgment; candidates should be prepared to discuss two relevant examples.
• Experience managing external vendors or technology partners against contractual deliverables, including escalation of issues.
• Experience managing technical projects to committed timelines, including dependencies.
• Experience working with patient-level health data from registries, EMRs, clinical research, or real-world data programs.
• Ability to facilitate discussions among clinicians and scientists and guide groups toward documented recommendations.
• Strong written communication skills, including clear documentation of decisions, standards, and rationale.
• Strong critical thinking and foresight, including the ability to anticipate downstream consequences, identify gaps, and make reasoned decisions with incomplete information.
• Commitment to participant-centered judgment, data privacy, and use of data consistent with participant consent.
• Ability and willingness to develop expertise across partner contracts, vendor management, technical delivery, scientific governance, privacy, and regulatory operations.

Preferred qualifications

• Master's degree or PhD in engineering, data science, life sciences or a related field.
• Neuromuscular or rare disease experience.
• Experience in a participant-facing or direct-to-patient registry, as distinct from a secondary-data program.
• Experience supporting biopharmaceutical partnerships or industry-sponsored data projects.
• Familiarity with HL7 or FHIR, healthcare interoperability, or common data model and common data element standards.
• Nonprofit or mission-driven organization experience.
• Experience contributing to scientific posters, abstracts or publications.
• Experience supervising staff or contractors.
• PMP or similar project management certification.

MDA is an Equal Opportunity/Affirmative Action employer. All qualified applicants will receive consideration for employment without regard to race, color, religion, sex, national origin, disability, or protected veteran status.

Benefits

MDA Benefits: 

*For full-time employees

• Medical, Dental and Vision insurance with prescription coverage
• Health Savings Account with contribution matching and Flexible Spending Accounts for medical and/or dependent care
• Paid sick leave
• Employee Assistance Program (EAP)
• 100% contribution towards basic life insurance, short-term and long-term disability
• Optional additional life insurance and dependent life insurance available
• 403(b) Retirement Savings Plan with company match
• Generous paid time off policy, with an increasing accrual rate schedule
• Paid holidays
• Standard 35-hour work week with flexible hours
• Remote, work from home opportunities
• Professional Learning and Development opportunities, including Leadership skills