Manager, Participant Engagement and Retention
- Compensation
- 65K–67K
- Location
- Not listed
- Work setup
- Remote
- Seniority
- Not specified
- Employment
- Not specified
- Experience
- Not specified
- Category
- Not specified
- Posted
Skills
Must have
- Bachelor's degree, or an equivalent combination of education and experience.
- Four or more years supporting individuals through a multi-step process — patient or participant engagement, clinical research coordination, case management, member services, or comparable direct-servi
- Demonstrated ability to write for a general audience in plain language, particularly on complex or sensitive subjects.
- Sound judgment handling confidential health information and working familiarity with HIPAA.
- Warmth and patience with patients and families, sustained under volume.
Nice to have
- Experience in rare disease, neuromuscular disease, or patient registries.
- Supervisory or team lead experience.
- Experience tracking cases and reporting on outcomes using a CRM, help desk, or comparable system.
- Familiarity with electronic health record patient portals and health data sharing.
Full 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 Participant Engagement and Retention Manager is a member of the MOVR team within the Research Department and reports to the Director, Clinical Operations. This position manages the participant experience from initial contact through enrollment, medical record authorization, data sharing, and ongoing participation in the MOVR Registry. The Manager serves as a primary resource for participants and families, helping them navigate enrollment requirements and resolving barriers to participation.
The Manager leads participant support, onboarding communications, targeted follow-up, re-consent campaigns, and retention activities. Working with Marketing and Communications and Family Care and Services departments, this individual develops clear, accessible information about consent, data privacy, medical record sharing, and automated record retrieval. The Director supervises the Participant Engagement Coordinator, who willl use participant feedback and enrollment data to improve the participant experience.