[Hiring] Participant Engagement and Retention Manager @MUSCULAR DYSTROPHY ASSOC INC

Role 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 will use participant feedback and enrollment data to improve the participant experience.

This role addresses enrollment barriers by supporting participants through each stage of the process and measuring progress beyond consent to data contribution and sustained engagement.

Responsibilities

• Establish and manage the participant help desk, including intake, response-time targets, case tracking, and escalation of participant inquiries, enrollment questions, and electronic health record authorization issues.
• Develop and conduct outreach tailored to each stage of enrollment, including follow-up with participants who have not completed consent or authorized access to all relevant medical records.
• Manage onboarding communications, re-consent campaigns, and a retention calendar to support ongoing participation in the registry.
• Partner with Marketing and Communications and Family Care and Services to develop plain-language materials explaining data privacy, medical record sharing, and automated record retrieval.
• Document and analyze participant inquiries and barriers, and use findings to recommend improvements to consent language, enrollment workflows, and the medical record authorization process.
• Track and report conversion at each stage of enrollment against program targets, identify where participants discontinue the process, and recommend actions to improve completion and data contribution.
• Support participant interviews and coordinate logistics for the Patient Advisory Body.
• Establish a staffed participant help desk with a published response-time target.
• Reduce discontinuation at the medical record authorization step.
• Use participant inquiry findings to improve participant-engagement and recruitment materials.

Qualifications

• 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-service work.
• 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.

Preferred Qualifications

• 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.

Benefits

• 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.