We are pleased to share that the NIH FHIR^® Training initiative was recently honored with a Distinguished Poster Award at the 2024 AMIA Annual Symposium! Congratulations to Snipta Mallick, BS (ODSS) Steve Tsang, PhD (ODSS), Max Masnick, PhD (MITRE Corporation), Nicole Persing, PhD (MITRE Corporation), and Belinda Seto, PhD (ODSS).

The poster, FHIR^®-ing up Clinical Research: Outcomes from an Innovative NIH Training Initiative, described efforts to develop accessible, modular, and reusable on-demand training materials to enable the adoption of Health Level Seven International (HL7^®) Fast Healthcare Interoperability Resources (FHIR^®) standards in the clinical research community. This work was a collaboration between the NIH Office of Data Science Strategy (ODSS), National Institute of General Medical Sciences (NIGMS), and the MITRE Corporation.

The AMIA Annual Symposium is an annual meeting for thousands of biomedical and health informatics professionals from around the world hosted by the American Medical Informatics Association^®. Distinguished posters are chosen from a selection of posters recommended by the Annual Symposium Poster Committee and the Awards Committee.

Training materials are continuously updated and publicly available. Find resources on the FHIR training page and learn more about ODSS’s work in clinical informatics.

Find latest updates from ODSS at datascience.nih.gov or follow us on LinkedIn and X.

The National Childhood Cancer Registry (NCCR) Data Platform is the nation’s first resource that links childhood, adolescent, and young adult records across population-based cancer registries and real-world data partners. Created by the National Cancer Institute (NCI) Childhood Cancer Data Initiative (CCDI), this user-friendly platform connects social drivers of health, pharmacy claims, and medical claims data, along with data from organizations like the Children’s Oncology Group, with plans to add more data resources in the future. 

By sharing and linking these data, NCI aims to enhance researchers’ abilities to develop cohorts of interest, expand the scope of existing data, and drive new discovery. 

Explore the Data Platform or forward the link to your colleagues! Questions about CCDI or the NCCR Data Platform? Email [email protected].

Johanna Goderre, MPH. will present "Opportunities to Advance Research for Children, Adolescents, and Young Adults with Cancer through Secondary Data Sharing in the New National Childhood Cancer Registry Data Platform" on December 13, 2024, from 12:00 p.m.–1:00p.m. ET.

About the Seminar

The National Cancer Institute has been working with central cancer registries, medical and pharmacy claims processors, and healthcare providers like children's hospitals, NCI-supported Cancer Centers, and radiation oncology providers through the National Childhood Cancer Registry. The new Data Platform combines population-based cancer registry and real-world data across the cancer care continuum and into survivorship for secondary data analysis by all kinds of researchers, including students. It will improve researchers’ ability to accelerate our scientific understanding of cancer in children, adolescents, and young adults.

About the Speaker

Ms. Goderre is the Technical Lead for the National Childhood Cancer Registry. She holds an MPH and GIS certification with over 20 years’ experience in health research and evaluation, public health informatics, health systems delivery, and the information systems necessary to support analysis and insight in those fields.  She draws from her experiences in epidemiologic research studies, healthcare systems, and health information exchange efforts to deliver high-quality data and bioinformatics IT systems for state and federal governments. The National Childhood Cancer Registry (NCCR) Data Platform is a groundbreaking tool that addresses infrastructure gaps by increasing accessibility, sharing, and reuse of data.

About the Seminar Series

The seminar is open to the public and registration is required each month. Individuals who need interpreting services and/or other reasonable accommodations to participate in this event should contact Allison Hurst at 301-670-4990. Requests should be made at least five days in advance of the event.

The National Institutes of Health (NIH) Office of Data Science Strategy hosts this seminar series to highlight exemplars of data sharing and reuse on the second Friday of each month at noon ET. The monthly series highlights researchers who have taken existing data and found clever ways to reuse the data or generate new findings. A different NIH institute or center will also share its data science activities each month.