February Data Sharing and Reuse Seminar

Mr. Alex VanHelene, Dr. Sanjay Mishra, Dr. Michael Rooney, and Dr. Jeremy L. Warner will present COVID-19 and Cancer: Catalyzing Collaboration on February 9, 2024, at 12 p.m.

About the Seminar

To understand and assess the uncertain effects of COVID-19 on people affected by cancer, CCC19 was founded in March 2020 and developed a robust and agile strategy to collect and disseminate prospective, granular, uniformly organized information on patients with cancer diagnosed with COVID-19 — at scale and as rapidly as possible. This systematic data sharing recipe included three key components: data sourcing and acquisition, data management, and data model sharing.

Taking inspiration from existing best practices, CCC19 sought to accelerate clinical research by facilitating data sharing amongst 126 cancer institutions across North America and eventually logged more than 19,000 cases – the largest registry of its kind. Data standardization is managed through existing clinical vocabularies whenever possible. Through continuous quality assurance of contributed data from participating institutions, CCC19 ensures compliance and standardization with registry-based research standards. Our knowledge is publicly accessible because of the direct features of REDCap that enable local reusability, and open code sharing on GitHub. To further emphasize best practice “recipes” to advance biological and biomedical research activities, all CCC19 publications, the data model, and derived variable code are publicly available. CCC19’s transparent and streamlined approach to data management demonstrates the power of data sharing practices to advance scientific discovery and human health.

About the Speakers

Mr. Alex VanHelene is a Clinical Research Assistant at Rhode Island Hospital. Dr. Sanjay Mishra is the Research Program Manager at Rhode Island Hospital and Coordinator of the COVID-19 and Cancer Consortium. Dr. Michael Rooney is a Radiation Oncology Resident at the University of Texas MD Anderson Cancer Center. Dr. Jeremy L. Warner is a Professor of Medicine at Brown University and Director of the Research Coordination Center of the COVID-19 and Cancer Consortium.

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 Janiya Peters 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.