St. Jude Children’s Research Hospital shared on LinkedIn:
“St. Jude is a proud collaborator in the National Cancer Institute (NCI)’s Childhood Cancer Data Initiative (CCDI). The CCDI is connecting and sharing clinical care and research data generated by children’s hospitals, clinics and networks, unifying data from multiple sources through a dedicated application programming interface (API). The Federated API for pediatric cancer data has reached its first anniversary, marking a significant milestone in research infrastructure.
This collaborative effort brought together St. Jude and three institutions across the country to create an interoperable system for data sharing. Locating and harmonizing pediatric cancer datasets across multiple platforms has long been a challenge for researchers. Information on diagnosis, treatment and outcomes is often stored at the hospital or institution where the child is treated.
The Federated API enables users to query consistent data attributes such as sex and race across different data commons, streamlining research and minimizing the need to download large datasets.
As Clay McLeod, Director of Product Development and Engineering, described, ‘The API catalogs and allows user exploration of pediatric cancer research data contained within the federated data ecosystem – institutions across the United States.’ Since its launch, the API ecosystem has grown, and the community continues to expand through seminars, webinars and publications.
Data alignment regarding accurate diagnosis is now a key focus, essential for cohort building and analysis. The Cancer Classifications for Kids (CC4K) portal, developed by St. Jude Cloud, and now accepted by the NCI, addresses a critical gap in this area.
Michael Rusch, Director of Bioinformatics Software Development, noted, ‘Cancer type and subtype are probably the most fundamental lens through which we look at cancer, both in the clinic and in the research setting. This is especially important for us because pediatric cancer is a rare disease, so researchers need to build cohorts from multiple studies and institutions to get the power to make discoveries on the type of cancer they study.’
As Childhood Cancer Awareness Month draws attention to the ongoing need for progress, the consortium continues to meet regularly, refining the API and expanding its capabilities. By addressing longstanding challenges in data harmonization and accessibility, this project sets a new standard for data sharing and collaboration in pediatric oncology research.”
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