Remote Patient Registry & Engagement Lead

FSHD Society; United States; On-site; USD 75,000 - 85,000; Full time

Benefits offered by this job

Health insurance

401(k) matching

Life insurance

Disability coverage

Flexible PTO

Voluntary benefits

Job summary

The FSHD Society is seeking a Patient Registry Manager to oversee the BetterLife FSHD health platform and research registry, ensuring data accuracy, user experience, and timely participant support. This role involves cross-functional collaboration with research, communications, and external partners.

Reporting to the Research and Care Programs Officer, you will manage data exports, quality control, and project coordination for new registry studies, while upholding HIPAA compliance and patient

Qualifications

• BS/BA degree or equivalent experience, required.
• At least 4 years of hands-on, patient-facing experience working in a registry or on clinical research studies, required.
• Demonstrated ability to independently own patient-facing research operations end-to-end, required.
• Experience working with a neuromuscular or rare disease patient community, preferred.

Responsibilities

• Manages participant support features, including entering new clinical trials and research opportunities and community polls
• Manages participant communications and notifications, working with the marketing team to create and refine messaging
• Develops participant education materials (e.g., videos, FAQs) and documents user feedback, including running patient focus groups for a deeper understanding of needs
• Works with the registry platform partner to resolve bugs and implement ongoing improvements

Skills

IRB processes

Human subjects protections

Data hygiene

MS Office

Time management

Clear communication

Patient advocacy experience

Education

BS/BA degree or equivalent experience

Tools

MS Word

MS Excel

MS PowerPoint

Job description

The FSHD Society is seeking a Patient Registry Manager to oversee the BetterLife FSHD health platform and research registry, ensuring data accuracy, user experience, and timely participant support. This role involves cross-functional collaboration with research, communications, and external partners.

Reporting to the Research and Care Programs Officer, you will manage data exports, quality control, and project coordination for new registry studies, while upholding HIPAA compliance and patient