Remote Participant Engagement & Retention Leader

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

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.