Portal Makes Genomic, Clinical Data Resources Available to Pediatric Health Researchers, Families

Sept. 13, 2018
A new data resource portal at the Children’s Hospital of Philadelphia (CHOP) offers researchers, clinicians and families access to open-source and cloud-based data resources to share information about childhood diseases, including pediatric cancer and birth defects.

A new data resource portal at the Children’s Hospital of Philadelphia (CHOP) offers researchers, clinicians and families access to open-source and cloud-based data resources to share information about childhood diseases, including pediatric cancer and birth defects.

CHOP’s Gabriella Miller Kids First Data Resource Center (DRC), a collaborative effort supported by the NIH Common Fund launched the data resource portal to help accelerate the discovery of precision-based treatments for pediatric disorders.

Led by CHOP’s Center for Data Driven Discovery in Biomedicine (D3b), DRC partners include the hospital’s Department of Biomedical and Health Informatics, Children’s National Health System, Ontario Institute for Cancer Research, Center for Data Intensive Science at the University of Chicago, Oregon Health and Science University and Seven Bridges, a biomedical data analysis company.

According to CHOP, the Kids First Data Resource Portal provides access to newly released, large-scale NIH-sponsored and consortia-based pediatric genomic and clinical disease data, and empowers accelerated discovery efforts by enabling collaborative cloud-based analyses across institutions and researchers around the globe.

Data from approximately 8,000 DNA and RNA samples from children affected with cancer or structural birth defects and their families will be ready for analysis with the launch of the portal and are expected to grow to more than 30,000 over the next few years. The Kids First Data Resource Portal will be one of the largest collections of integrated genomic and clinical data for these childhood diseases, which previously were studied largely in isolation.

The portal also provides rich resources for the patient, medical and research communities to partner, learn and interact with the Kids First DRC, highlighting the importance of collaboration and data sharing across institutions and between disease communities.

“In a prepared statement, Adam Resnick, Ph.D., lead principal investigator of the Kids First DRC and director of the D3b at CHOP’s Division of Neurosurgery, discussed the significance of the research portal: “The DRC’s Kids First research portal represents a data-driven discovery milestone for the implementation of tools and resources for performing biomedical research and for doing science collaboratively in entirely new and unprecedented ways in the hopes of accelerating discovery and clinical translation for each and every child suffering from cancer or a structural birth defect around the globe,”

Last year Healthcare Informatics published an in-depth interview with Dr. Resnick about the collaborative approach CHOP and other pediatric hospitals are taking to research and biomedical data analysis.

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