Manager; Remote - Global Rare Disease Nonprofit

Location:

United States (remote)

Organization’s Mission:
To support and connect the global FOP community while driving research toward treatments and a cure.

About the Organization:
The International Fibrodysplasia Ossificans Progressiva (FOP) Association (IFOPA) is the leading international nonprofit organization dedicated to accelerating research initiatives and supporting those impacted by fibrodysplasia ossificans progressiva (FOP), a rare, disabling genetic condition that causes bone to form in muscles, tendons, ligaments, and other connective tissues. We work closely with patients and families, national FOP organizations around the world, and leading scientists, clinicians, and drug developers.

The FOP Registry is the only global registry for people living with FOP. It holds 11 years of longitudinal, patient-reported data and is available in 8 languages. More than one-third of the world's known FOP patient population is enrolled, and current registrants come from 61 countries.

The Real-World Evidence (RWE) Manager plans, designs, and runs real-world evidence studies in the FOP community. The Manager reports to the IFOPA’s Research Director. In this role, you will turn IFOPA’s strategic priorities into well-designed programs, maintain strong governance and regulatory practices, monitor outcomes, and use real-world data to provide insights for researchers, clinicians, industry, payers, policymakers, and FOP families.

This is a full-time, exempt position with no direct reports. You will manage volunteer committee members and advisors. All IFOPA staff work remotely from their homes. Travel is required, with the potential for occasional international travel.

• Registry leadership and real-world evidence strategy
• Provide overall program and operational leadership for the FOP Registry
• Identify ways to grow FOP real-world evidence generation through updates to Registry data fields, polls, one-time surveys, and other scientifically robust data collection tools and studies
• Advise on strategy for using the FOP Registry in the larger data ecosystem and in research and industry partnerships
• Establish and manage the real-world evidence budget
• Governance, partners, and advisors
• Manage processes for data-access requests, scientific review, data-use agreements, and tracking of resulting research products
• Manage the relationship with the Registry platform provider, Lumiio, and other real-world evidence vendors
• Convene and support the FOP Registry Medical Advisory Board and patient advisors
• Participate in the IFOPA Publications Committee
• Data quality and community engagement
• Lead community outreach to maximize diverse enrollment and longitudinal data collection (for example, 6-month follow-up surveys) and ad- hoc surveys
• Oversee data quality control, including verifying new enrollments
• Respond to Registry Help Desk requests and distribute Registry rewards monthly
• Sharing results
• Support publication of Registry data through platform dashboards and portals, community infographics and reports, conference presentations and posters, and peer-reviewed manuscripts, translating scientific information into accurate, accessible content for FOP families
• Represent the FOP Registry at FOP family meetings and scientific meetings, including the FOP Drug Development Forum

We encourage you to apply even if you don't meet every item. We value an understanding of the FOP patient and family experience, or experience building trust with rare disease communities, as a qualification for this role.

• Bachelor's degree
• Extensive knowledge and experience with a variety of real-world data sources and with observational research study design and execution
• Working knowledge of human-subjects research, IRB processes, informed consent, data-use agreements, research contracts, privacy (such as HIPAA and GDPR), and clinical data governance
• Knowledge of biostatistical methods applicable to registry data analysis
• Proven track record of strategic data management and of driving collaborative publications
• Strong program and project management skills, including managing multiple stakeholders, competing priorities, and deadlines
• Clear, persuasive writing and speaking, including the ability to explain complex statistical concepts to diverse audiences and to create clear, impactful data visualizations
• Commitment to patient-centered research
• Ability to recruit and manage volunteer committee members and to work…