Amplifying and Sustaining the Impact of Childhood Cancer, Structural Birth Defect, and Down Syndrome Data

Institute or Center: Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) in collaboration with the National Heart, Lung and Blood Institute (NHLBI) and the Office of the Director (OD)

Project Title: Amplifying and Sustaining the Impact of Childhood Cancer, Structural Birth Defect, and Down Syndrome Data

Skills sought:

  • Demonstrated creativity, leadership, and communication skills to address complex challenges
  • Comprehensive experience in data science and cloud architecture/engineering including knowledge of research-relevant commercial services to facilitate interoperability of platforms
  • Experience with, and knowledge of, security and data life cycle best practices, especially for the cloud 
  • Experience in developing strategies for managing large-scale human datasets (e.g., genomics, electronic health record data) and knowledge of associated tools, standards (such as FHIR®), and principles (FAIR)
  • Familiarity with deidentification and authentication procedures often required for sharing human data

About the position: NICHD seeks a senior data strategist to work closely with a diversity of leaders and experts to enhance and improve data platforms and infrastructure for biomedical research. The Scholar will:

  • Lead the development of a sustainability strategy for the INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE Project (INCLUDE) and Gabriella Miller Kids First Pediatric Research Program (Kids First) data and infrastructure, working with NIH staff to navigate scientific, technical, policy, and programmatic considerations.
  • Work with INCLUDE and Kids First researchers to identify high priority, cross-project use cases and convene experts/developers to federate systems to empower use cases (such as studying the overlap of leukemia and structural heart defects in children with Down syndrome who are sensitized to develop these pediatric conditions).
  • Facilitate the implementation of existing and emerging standards, technologies, or approaches to accomplish goals that benefit both programs and NICHD. 
  • Facilitate interoperability with other NIH and NICHD data resources, including DASH.

About the work: NICHD’s mission is to lead research and training to understand human development, improve reproductive health, enhance the lives of children and adolescents, and optimize abilities for all. The data science program at NICHD is at a critical point in its development and is integral to the success of NICHD’s strategic plan. The Data Scholar will work with NIH staff to develop and implement activities that increase the impact of these two high-priority data resources.

Datasets involved: INCLUDE and Kids First generate genomic, other -omics, phenotypic, imaging, mobile health, electronic health record, and other large-scale data from thousands of research participants

Why this project matters: These platforms are designed to accelerate research on childhood cancer and structural birth defects (Kids First) and Down syndrome (INCLUDE) and empower researchers to discover, aggregate, and analyze multiple datasets with the goal of uncovering new insights into the biology underlying these conditions that will lead to improved diagnostics, therapeutics, and quality of life for affected individuals. 

Work Location: Bethesda, MD (as conditions allow). Fully remote scholars will be considered.

Work environment: For this project NICHD is collaborating with staff at NHLBI, OD, and other NIH institutes and centers (ICs) as well as with extramural researchers who are invested in advancing data science for research in pediatrics and intellectual and developmental disabilities. The Scholar will engage in independent work in a team-based environment, will participate in strategic planning and initiatives at the IC and NIH level, and will advise senior leadership.   

To apply to this or other DATA Scholar positions, please see instructions here:

This page last reviewed on February 22, 2021