About Us:
The mission of the MPN Research Foundation is to stimulate original research in pursuit of new treatments – and eventually a cure – for the blood cancers essential thrombocythemia, polycythemia vera, and myelofibrosis, known collectively as myeloproliferative neoplasms (MPN).
MPN Research Foundation:
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Identifies, funds, and supports novel research to accelerate the discovery and development of effective MPN treatments.
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Convenes - facilitate global engagement across patient and caregiving, research and clinical, and industry stakeholders.
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Advocates - advance patient and researcher perspectives on the development of new treatments
Job Overview
We are currently seeking a highly motivated and experienced Registry Program Manager to join our team. The Registry Program Manager is responsible for overseeing all aspects of the registry project from successful planning, implementation, and management of the registry project, while effectively managing stakeholders, resources, and risks throughout the project lifecycle. With strong interpersonal skills and an understanding of hematology & oncology (or comparable field), the Registry Program Manager will collaborate with cross-functional teams to drive program success ensuring alignment with organizational goals and strategies.
The main goal of the registry is to capture MPN patient real-world data over multiple years with the long-term objective of addressing several fundamental questions regarding disease progression. These objectives are:
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Pursue broader and more consistent consensus to define MPN disease progression
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Identify and validate potential biomarkers of MPN disease progression
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Establish sufficient regulatory grade evidence to inform new clinical intervention endpoints
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Inform and advance standard of care across treatment settings with better understanding of disease progression
Job Duties
Accountabilities of the Registry Program Manager will be cross-functional and include, but not be limited to:
Registry Implementation:
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Coordinate with foundation leadership and advisors to inform the final development and design of the MPN patient registry anchored around studying disease progression.
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Develop a program management and project plan for detailed tasks, timelines, budgets, and dependencies to launch and maintain the registry.
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Serve as a liaison with commercial vendors to build and launch a technical product.
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Implement appropriate governance structure and manage the requisite steering and advisory committees.
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Coordinate across MPNRF staff, advisors, and other external vendors to ensure all best practices are incorporated in optimal registry design and management.
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Organize and oversee multiple workstreams, ensuring progress, and addressing risks and dependencies.
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Provide regular implementation updates on progress to MPNRF staff and board.
Registry Management:
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Act as the primary point of contact for the registry program, guiding its direction and ensuring its successful execution.
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Integrate feedback to continuously improve the input and output of the registry.
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Establish and manage the governance structure recommended including reviewing incoming data requests and setting up industry consortium.
Patient Engagement:
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Coordinate the patient outreach and engagement plan with marketing and communications, patient engagement staff, and vendors.
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Coordinate patient recruitment efforts in alignment with project timelines and objectives.
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Work with patient engagement team to utilize various communication channels to engage with patients and facilitate their enrollment in the registry and additional in research studies to keep them engaged with education and valuable givebacks over extended engagement periods.
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Support development of marketing and registry engagement materials.
Real-World Evidence (RWE) projects / data requests:
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Coordinate, with steering committee, study and data requests in accordance with governance guidelines.
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Assist in partnership discussions with companies to fulfill analysis requests, often in collaboration with industry experts.
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Manage contracts with industry partners for data and study requests.
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Coordinate the organization of data extracts and sharing.
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Enable research community study requests.
Industry Engagement:
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Engage with industry stakeholders through regular meetings, and communication, including ad hoc emails and relationship management for continued value and outcomes communication.
Presentations and Publications
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Serve as the lead subject matter expert presenting MPN patient registry objectives, design, and key outcomes at meetings and conferences.
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Coordinate the development and communication of key outcomes via posters, presentations, and publications.
Qualifications:
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Advanced degree preferred (MSc, PhD) in a relevant scientific field (data science, health information management, biology, hematology, oncology, molecular biology, clinical research).
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Proven success in setting up and leading patient registries and experience with health information sciences, clinical study protocols, patient health information standards, contemporary regulations and policies for health information management and access.
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Strong understanding of cancer research and the ability to grasp complex scientific concepts, preferably in hematology.
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MPN Disease landscape understanding (acquired).
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MPN Patient unmet need and experience understanding (acquired).
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Advanced interpersonal skills.
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Ability to bring about programmatic change that drives organizational strategy.
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Excellent written and verbal communication skills.
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Detail-oriented with a commitment to accuracy and scientific integrity.
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Ability to collaborate effectively with cross-functional teams.
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Ability to straddle the team environment and individual tasks to achieve common goals.
Reporting Lines:
This individual reports to the Chief Executive Officer
If you are passionate about making a difference in the field of cancer research and possess the necessary skills and qualifications, we invite you to join our dynamic team. Together, we can contribute to the ongoing fight against cancer and improve the lives of those affected by this devastating disease