Company Description The American College of Medical Genetics and Genomics (ACMG) is the only nationally recognized interdisciplinary professional membership organization that represents the interests of the entire medical genetics team including clinical geneticists, clinical laboratory geneticists, and genetic counselors. Together, the ACMG and its members engage in coordinated efforts to improve patient care, ensure optimal reimbursement for genetic service providers, establish standards of care and laboratory policy, and educate members about advances important to their practices.
ACMG operates the Newborn Screening Translational Research Network (NBSTRN). The NBSTRN facilitates ground-breaking research in newborn screening as an important part of the Eunice Kennedy Shriver National Institute of Child Health and Human Development Hunter Kelly Newborn Screening Research Program. The NBSTRN began ten years ago as an effort to engage stakeholders across the NBS system and has matured into a dynamic and committed network of researchers, public health professionals and clinicians. Our team works with researchers who discover technologies to screen and diagnose disease, clinicians who study cutting-edge treatments and management strategies, state newborn screening programs who pilot new technologies and treatments, and policy makers who consider the ethical, legal and social implications of NBS research. Job Description ESSENTIAL FUNCTIONS
Scientific Strategic Planning and Management - Contributes to assessing, evaluating, and conducting assessments to improve approach to data collection, aggregation, sharing and analysis while exploring a systems approach to evaluating the growth, implementation and sustainability of successful pilot studies.
- Contributes to the development and dissemination of awareness campaigns and tools such as online training/online courses/webinars, social media tools (LinkedIn), and publication.
- Contributes to the development of strategic approaches to data visualization, communication tools for policy-making, and effective dissemination and accessibility to NBSTRN content.
- Assists with directing the efforts of the Data Governance and Researcher Needs Working group in creating de-identified data for programming, pilot studies, research, quality improvement, and other future studies for sustainability.
- Contributes to drafts of yearly deliverables, timeline and milestones for expert working groups.
- Contributes to quarterly and annual report for assigned expert working group that includes: member roster including their expertise as it relates to the WG activities; purpose and charge of the WG for the upcoming year of the contract, including face-to-face and teleconference meetings; accomplishments and setbacks during the previous year starting in year 2 of the contract, and the reason for the setbacks in bullet point format and proposed solutions; list of activities for the WG for the upcoming year of the contract, including number of face-to-face and teleconference meetings planned; and a list and copy of any work products by the WG (such as reports, manuscripts written, etc.).
- Reports on workgroup activities at least once a year to the NBSTRN Steering Committee.
Dissemination and User Training
- Develops new training opportunities for graduate, post-doctoral fellows, interns, genetics counselors and other health professionals. Promote research findings and network conducted by NBSTRN researchers through publications. Write manuscripts on case studies/research, white papers, and annual reports.
- Works with the NBSTRN team and subcontractor(s) to develop content for the website and dissemination.
- Works with external partners to draft manuscripts describing NBSTRN work group activities.
- Aids in generating data and written content for dissemination at conferences, meetings, and through social media accounts.
- Participates in professional meetings as needed.
- Reviews training plans and content for users.
- Performs user testing of information technology tools and systems.
- Contribute to new approaches in tools development and procedures to the open-source community.
Management
- Oversees the NBSTRN Research Assistant for all tasks and the NBSTRN Project Coordinator for tasks related to working groups and meetings.
- Moderate NBSTRN ELSI Workgroups to explore new projects, policies and dissemination vehicles of ELSI issues.
COMPETENCIES - Working knowledge of bioinformatics tools including REDCap, Tableau, statistical tools, Microsoft Office Suite and related information technology applications;
- Highly developed written and oral communication skills evidenced by published peer review manuscripts;
- Experience delivering and/or developing educational and training materials to a variety of skill sets and educational backgrounds preferred;
MINIMUM QUALIFICATIONS
- PhD in Public Health, Organizational Leadership, Communication Sciences, Management Science or related discipline.
- 10 or more years’ experience in management of a scientific project, grant, laboratory or contract.
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