Research and Operations Lead

The Research and Operations Lead serves as a central, integrative role within the American Porphyrias Expert Collaborative (APEX), supporting both the organizational infrastructure and the research and consortium-facing activities of the organization. This position functions as a backbone role—ensuring that APEX’s administrative systems, governance, financial tracking, research coordination, and investigator engagement operate smoothly, accurately, and in alignment with organizational priorities.

This individual works closely with APEX leadership, board members, investigators, research sites, collaborators, sponsors, and service providers to manage day‑to‑day operations while advancing research initiatives across a complex rare disease environment. The role blends operational stewardship with research network coordination and requires strong organizational judgment, persistence, diplomacy, and attention to detail.

The ideal candidate is mission‑driven, highly organized, comfortable in academic and nonprofit healthcare settings, and able to manage multiple streams of responsibility with professionalism and discretion.

Responsibilities include, but are not limited to, the following:

Organizational Operations

• Serve as primary coordinator of APEX administrative and operational workflows.
• Maintain internal trackers, calendars, documentation, and shared files across core organizational functions.
• Organize and manage records across platforms such as SharePoint, Teams, Google Workspace, Box, and related systems.
• Track deadlines, action items, and recurring responsibilities, ensuring timely follow‑up and completion.
• Support continuous improvement of systems and processes that enhance organizational efficiency and accountability.

Board, Governance & Leadership Support

• Coordinate Board of Directors and executive meetings, including scheduling, agenda development, materials, logistics, and follow‑up.
• Prepare and distribute board minutes and track decisions and action items.
• Maintain governance records including board terms, re‑election timelines, bylaws, policies, and working group structures.
• Support posting and management of approved governance materials on organizational platforms.
• Provide ongoing administrative support to APEX leadership with a high level of discretion.

Financial Administration & Accounting Coordination

• Serve as liaison with accounting and financial service providers.
• Track monthly financial statements, management reports, reconciliations, and year‑end documentation.
• Organize documentation for annual tax filings, Form 990 support, audits, and compliance needs.
• Track invoices, reimbursements, outgoing payments, and supporting documentation.
• Maintain organized financial files for reporting, board review, and operational oversight.

Research Network & Site Coordination

• Serve as a central point of coordination for APEX research sites and consortium activities.
• Track site onboarding, data use agreements, institutional requirements, access credentials, and key milestones.
• Coordinate follow‑up with participating institutions regarding agreements, signatures, and readiness.
• Maintain research and site trackers related to agreements, funding flow, timelines, and implementation status.
• Ensure participating sites receive timely communication, guidance, and follow‑through.

Study Operations & Data Governance Support

• Support coordination of longitudinal and consortium‑based research initiatives.
• Track study readiness, enrollment planning, and operational requirements.
• Support systems coordination (e.g., REDCap access, user IDs, compliance documentation).
• Assist with implementation and dissemination of data governance and publication policies.
• Track policy‑related questions, updates, and operational follow‑up.

Investigator, Working Group & Consortium Engagement

• Coordinate investigator calls, research working groups, and consortium meetings.
• Support agenda preparation, materials, minutes, and follow‑up for scientific and network meetings.
• Track working group membership, engagement, access, and evolving structure.
• Maintain professional communication across investigators, research coordinators, and collaborators.
• Support initiatives that strengthen engagement and participation across the APEX network.

Publications, Scientific Meetings & Awards

• Maintain publication trackers and support collaborative manuscript, abstract, and submission workflows.
• Track invitations, participation, deadlines, submissions, and follow‑up communications.
• Support planning and logistics for scientific summits, investigator meetings, and working sessions.
• Coordinate administrative aspects of APEX research awards and prize programs, including submissions, reviews, decisions, and payments.
• Maintain records for current and past awardees and support leadership communications.

Grants, Sponsorships & Membership Tracking

• Track research‑related grants, sponsorships, and site funding in coordination with leadership.
• Monitor timelines, documentation, funding distributions, and obligations.
• Maintain sponsorship and membership trackers including invoices, payments, renewals, and reconciliation.
• Support leadership in maintaining accurate stakeholder records across experts, partners, and collaborators.

• Bachelor’s degree required; master’s degree or advanced training preferred.
• 3–7 years of relevant experience in nonprofit operations, research administration, academic medicine, healthcare programs, or related fields.
• Demonstrated experience supporting leadership, boards, investigators, or complex stakeholder networks.
• Strong organizational, project coordination, and follow‑through skills.
• Excellent written and verbal communication skills.
• Comfort managing detailed tracking systems across multiple initiatives.
• Experience working with tools such as Excel, Teams, SharePoint, Google Workspace, REDCap, or similar platforms.
• Ability to handle sensitive and confidential information with professionalism.

• Experience in rare disease, clinical research networks, academic medicine, or nonprofit scientific organizations.
• Familiarity with research site onboarding, data use agreements, publication coordination, or grant administration.
• Experience supporting scientific meetings, boards, or membership‑based organizations.

• Exceptionally organized, persistent, and dependable
• Calm under pressure with strong judgment and discretion
• Professional, diplomatic, and service‑oriented
• Comfortable interacting with physicians, scientists, and institutional partners
• Mission‑driven and committed to behind‑the‑scenes excellence

This role reports to APEX leadership and works closely with scientific leaders, investigators, research sites, and collaborating partners across the APEX network.

·      Full-time

·      In office, downtown Bethesda, Maryland

·      Some evening/weekend meetings required (<10%)

·      Occasional travel required for meetings or events (<10%)

SALARY

·      Salary will be commensurate with the qualifications and experience of the candidate