Manager, Participant Engagement and Retention

Muscular Dystrophy Association, Inc.; Chicago (IL); Remote; USD 65,000 - 67,000; Full time

Benefits offered by this job

Medical, Dental and Vision insurance

Health Savings Account with company-m;

Paid sick leave

Employee Assistance Program (EAP)

Life insurance and disability, with 0%

403(b) Retirement Savings Plan with会社マ

Generous paid time off

Paid holidays

Remote work opportunities

Professional Learning and Development

Job summary

Muscular Dystrophy Association, Inc. (MDA) is seeking a Participant Engagement and Retention Manager for the MOVR Registry within the Research Department.

This role guides the participant experience from initial contact through enrollment, consent, and data sharing, addressing barriers and promoting ongoing participation. The position reports to the Director of Clinical Operations and collaborates with Marketing, Family Care, and Services.

Qualifications

• Bachelor's degree or equivalent combination of education and experience.
• 4+ years supporting individuals through multi-step processes (patient engagement, clinical research coordination, or related direct-service work).
• Strong ability to write clearly for a general audience on complex subjects.
• Sound judgment handling confidential health information and familiarity with HIPAA.
• Warmth and patience with patients and families under volume.

Responsibilities

• Establish and manage the participant help desk with intake, response targets, case tracking, and escalation.
• Develop outreach at each enrollment stage and follow up with incomplete consents.
• Manage onboarding communications, re-consent campaigns, and retention calendar.
• Create plain-language materials on data privacy, medical records, and automated retrieval.
• Document inquiries and barriers to improve consent language and workflows.
• Track enrollment progress against targets and identify where participants discontinue.
• Support participant interviews and 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.
• Improve participant engagement materials based on inquiries.

Skills

Patient engagement

Plain language writing

HIPAA familiarity

Communication under pressure

Education

Bachelor's degree or equivalent

Job 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.

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.

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

Salary Range: This position's salary range is $65,000-$67,000.

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

Qualifications:

Required 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.

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