Global Genes

Compensation

Full Description

Program Manager, Research Data Operations Job Description Reports To: Director, Program Operations Status: Full-time Location: Virtual/Remote (in U.S.) Global Genes is looking for a Program Manager, Research Data Operations for its RARE-X Research program who will ensure timely completion of project deliverables for a diverse set of program and research initiatives.This role sits at the intersection of data management, project management, and partner engagement, driving high-quality research data access while upholding compliance and contractual obligations. About Global Genes and RARE-X: Global Genes is a 501c3 non-profit organization dedicated to eliminating the burdens and challenges of rare disease for patients, families and disease communities worldwide. With a mission to grow the ranks of patient advocacy leaders who will drive the next generation of rare disease breakthroughs, Global Genes equips rare disease advocates with the tools, training, and trust to lead activated communities, advance research, and widen the drug development pipeline. The RARE-X research program at Global Genes enables robust data collection, sharing, analysis and federation of natural history data for rare disease, with the goal of partnering with patient advocates to accelerate rare disease research. RARE-X is a cross-disorder research program, and is currently collecting data on nearly 90 different rare diseases. Responsibilities: Data Access & Use Agreements • Manage data access request and use agreement pipeline, and workflow. Ensure project documentation (requests, agreements, agendas, minutes, etc.) is organized, complete, timely, accurate, and in accordance with standards and policies. • Serve as the primary point of contact for data access requests. Meet with data requestors, including researchers, patient advocacy leaders, project sponsors, etc. to clarify data needs. • Lead weekly Data Analytics meetings to coordinate execution of data access requests. • Create, negotiate, and finalize data use agreements from existing templates, in collaboration with legal, data protection, and research leadership. Serve as the primary point of contact for researchers and their institutions during data use agreement negotiation and execution. Data Delivery & Quality Assurance • Manage the research data delivery schedule and workflow, ensuring contractual timelines are met. • Collaborate with the data analytics team on data exports. Run data exports as needed. Perform quality assurance reviews before data deliveries. • Create and maintain external data-sharing sites for researchers, managing permissions and dataset lifecycles. Deliver datasets to researchers, track delivery communications, and archive data as required. • Coordinate and fulfill data visualization requests for patient advocacy groups. • Perform quality checks and deliver quarterly reports to patient advocacy groups in collaboration with data analytics and community engagement staff. • Support data tokenization workflows to ensure data is research-ready while maintaining participant confidentiality. • Support the analysis, evaluation, and interpretation of research data to be used in grant proposals, publications, PR, and program reviews. Partner Engagement • Act as a key liaison with researchers, patient advocacy groups, and sponsors for data access and needs. • Manage communication and expectations with external stakeholders to ensure successful data handoffs. • Support RARE-X project deliverables, ensuring data-related milestones are met. • Collaborate cross-functionally with science, platform, data analytics, community engagement, and operations teams to align on deliverables and compliance. Project Management • Define project scope, goals, deliverables, and resource needs for research data projects in collaboration with key stakeholders and project team members. Develop appropriate project metrics and ensure their alignment with organization and team performance metrics. • Facilitate effective cross-functional communication and collaboration among project team members, ensuring alignment on organization-wide program objectives and priorities. Provide timely support to resolve roadblocks for team members to achieve project and program goals. • Identify and manage project risks, issues, and dependencies. Propose and implement mitigation strategies as needed. • When needed, manage conflicts on projects and project teams. Proactively escalate issues to senior management and propose solutions. Qualifications: • Bachelor's or higher degree in a major such as social or health science or related; OR appropriate combination of education and experience and 3-5 years' research study or other relevant experience required. • 3+ years in data management, preferably in healthcare, public health, or health tech fields. Experience carrying out agreement-based data deliverables. Experience working with rare disease data is strongly preferred. • Familiarity with project management software tools, methodologies, and best practices. • Demonstrated ability to lead without formal authority and past experience leading project delivery through cross-functional collaboration. • Prior experience interacting with researchers is strongly preferred. • Good communication skills; demonstrated effective spoken and written communication, including willingness to ask questions when clarification or amplification is required. • Ability to work in a remote team environment. Ability to work without close supervision. • Attention to detail and ability to adhere to instructions/procedures. Flexibility in adapting to new procedures and contributing to building new procedures when needed. Comfortable in a start-up environment. • Good time management skills; efficient and resourceful in problem-solving. • Knowledge of basic computer skills, familiarity with Windows environment. • Must complete CITI training before interacting with any participants & must recertify every 3 years. • Must be based in and authorized to work in the United State. Salary range is $90,000 to $110,000 depending on relevant experience plus comprehensive benefits. If interested, please_ submit your resume to humanresources@globalgenes.org _with a cover letter that explains why the position at Global Genes appeals to you, and how your experience & skills qualify you for this job. We appreciate all interest however, we will only respond to those individuals with whom we have a further interest. THANK YOU FOR YOUR INTEREST IN GLOBAL GENES! Equal Opportunity Employer committed to diversity in the workplace. The statements herein are intended to describe the general nature and level of work being performed by employees and are not to be construed as an exhaustive list of responsibilities, duties, and skills required of personnel so classified. Furthermore, they do not establish a contract for employment and are subject to change at the discretion of the employer Job Type: Full-time Pay: $90,000.00 - $110,000.00 per year Benefits: • 401(k) • Dental insurance • Employee assistance program • Flexible spending account • Health insurance • Health savings account • Life insurance • Paid time off • Parental leave • Vision insurance Work Location: Remote