Emily’s Entourage (EE) is seeking a part-time (10-15 hours per week) Patient Registry Coordinator to facilitate the activities, regular functions and expansion of EE’s Cystic Fibrosis (CF) nonsense mutation patient registry.
The Patient Registry Coordinator is responsible for overseeing daily operations and supporting the growth of the EE CF nonsense mutation registry, including but not limited to managing confidential patient data, performing data queries and reports, facilitating business development opportunities and developing partnership proposals, and developing and managing industry and academic partnerships. This is an exciting new position to help build, formalize and grow EE’s international CF nonsense mutation patient registry.
The direct-to-consumer registry contains individuals with one or two copies of a nonsense mutation of CF. It allows individuals to contribute demographic and genetic data to become informed of relevant research, clinical advances and drug trials, and it helps academic and industry sponsors to recruit for clinical trials in a more targeted and efficient manner, thereby expediting the development of life-saving therapeutics.
The Patient Registry Coordinator will join a core team of five, including a full-time Director of Operations, and Marketing and Program Manager, a part-time Digital Event and Campaign Manager, Development and Special Projects Officer, and two co-founders. Additionally, EE is hiring a Chief Scientific Officer in Spring 2021. The Patient Registry Coordinator will report to the co-founders and work closely with the CSO, Director of Operations, and Director of Strategic Partnerships.
The organization is based in Bala Cynwyd, PA but is currently virtual due to COVID-19. This position is open to local and remote-only applicants.
EE is an innovative 501(c)3 that funds research for new treatments and a cure for nonsense mutations of Cystic Fibrosis (CF), a fatal genetic disease afflicting Emily and many others. Since 2011, Emily’s Entourage has awarded millions of dollars in research grants, launched a CF gene therapy company that has been acquired by a large pharmaceutical company, and led worldwide efforts to drive high-impact research and drug development.
The foundation’s work is particularly critical now as revolutionary breakthroughs are available for 90% of the CF population, but those with nonsense mutations fall in the outlying 10% that do not benefit from these major advances. EE is laser-focused on changing that—and doing it fast, so nobody is left behind.
Importantly, the work of EE holds the potential to benefit not only those with nonsense mutations of CF. Roughly 12% of all genetic diseases are caused by nonsense mutations, which means 30 million people worldwide live with a disease caused by a nonsense mutation. The research that EE is spearheading has the potential to have wide-reaching effects, far beyond the CF community.
EE has been featured in the New York Times, STAT, CNN, TheSkimm, People, and more. Emily was named a “Champion of Change” for President Obama’s Precision Medicine Initiative and is the recipient of the 2016 Global Genes Rare Champion of Hope for Advocacy Award and the 2020 Philadelphia Magazine Luminary Award.
Operations and Data Management
Maintain and regularly update registry data, ensuring patient confidentiality and security of stored patient data at all times
Perform quality assurance processes on patient data
Prepare reports and records on registry activities, progress, status or other special reports for organization leadership and management
Work to ensure accuracy of genetic information, including outside counsel if needed
Work with legal counsel to ensure international compliance to applicable patient data, privacy, and healthcare regulations
Serve as the lead point of contact and manage relationships with industry and academic registry sponsors
Develop proposals for registry sponsors, including providing key information, reports and data
Plan, coordinate and facilitate volunteer Medical Review Committee meetings and provide information and documentation necessary to evaluate prospective partnerships and clinical trials
Report information and results to organization leadership and management, outside partners and organizations as appropriate
Maximize usage of current registry platform
Manage development and implementation of a new registry platform and ensure smooth data migration
Manage relationship with registry platform vendor
Perform data queries and generate reports as requested to meet the needs of partners utilizing the registry and for internal benchmarking
Patient Outreach and Communications Management
Draft communications to patients regarding clinical trial opportunities
Acts as the liaison between patients and clinical trial sites
Generate timely and appropriate follow-up to patients as needed
Assist in executing outreach strategies aimed at increasing awareness and international enrollment in registry, including direct to patient outreach and partnerships with other organizations
Pay and Benefits
EE offers a competitive salary based on experience. This position is not eligible for benefits.
Bachelor’s degree in relevant scientific or technical field
3+ years experience coordinating or managing interactive database systems or data management
Previous experience in patient registries strongly preferred
Rare disease experience preferred, but not required
Previous experience in business development and managing relationships with external sponsors desirable
Basic understanding of database standards and federal regulations
Experience in project management and/or clinical research
Consistently and positively communicates and collaborates with colleagues, organization leadership, and registry stakeholders, both internal and external
Impeccable attention to detail
Exemplary verbal and written communication skills
Efficient, well-developed organizational and time management skills
Self-starter and goal-oriented with the ability to prioritize projects, follow through and meet deadlines
Ability to take initiative to problem solve when faced with challenges
Excellent judgement and a strong commitment to ethical standards
Utmost respect for data integrity and privacy when managing confidential patient information
Hardworking with an attitude of “leading with ‘yes’” and "whatever is necessary" to complete the job
Team-oriented player able to work alongside and communicate openly with organization leadership and staff, as well as board members, key advisors, and volunteers
Interested candidates should submit a one-page cover letter and resume to firstname.lastname@example.org. The cover letter should describe (a) previous relevant experience and (b) why the position is right at this stage in his/her career.
Emily’s Entourage provides equal employment opportunity to all persons regardless of age, race, color, religion, national origin, gender, sexual orientation, marital status or disability.
Telecommuting is allowed.
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About Emily's Entourage
Emily's Entourage is an innovative 501(c)3 foundation that accelerates research for new treatments and a cure for nonsense mutations of Cystic Fibrosis, a fatal genetic disease primarily afflicting the lungs and digestive system. Since 2011, Emily's Entourage has awarded millions of dollars in research grants, launched a CF gene therapy company recently acquired by a large pharmaceutical company, and led worldwide efforts to drive high-impact research and drug development. The organization has been featured in national media, including the New York Times, STAT, CNN, People, and more.