Why Create the Kids First Data Resource Portal?

There are currently limited resources for researchers studying the underlying genetics of pediatric diseases. Cancer and birth defects represent a landscape of highly complex and poorly understood diseases. While there is already a healthy web-based research ecosystem for adult cancer genomics data there is no comprehensive portal for pediatric cancers. Additionally, there are few web- or application-based tools to assist researchers investigating the causes and consequences of structural birth defects, and no online resources that combine the phenotypic and genotype information for these two classes of pediatric disease. This is despite abundant evidence that structural birth defects and pediatrics cancers share common causation and biological pathways including such relatively common syndromes as Down, Klinefelter, Wiskott-Aldrich, Noonan, and Perlman, are associated with elevated cancer risk. The Kids First Data Resource Portal brings together the childhood cancer and structural birth defect research communities, providing a unique combination of large-scale integrated data resources and scalable cloud-based computation for researchers to leverage the information gathered by one community to acquire insights in the other, and to recognize and promote collaborations among the two disciplines and across diverse expertise.

Quick Start

Who is it for?

As the Data Resource Center's chief outward-facing tool, the Data Resource Portal will serve the needs of four group of users.



Search, view, analyze, and identify currently accessible data along with your own to support your research

Healthcare Professionals-image

Healthcare Professionals

Map patients in your disease of interest by disease characteristics and view molecular profiling

Patients/Family Members-image

Patients/Family Members

Learn about disease-specific research, become a Kids First partner, and support data sharing

Community Members-image

Community Members

Learn about scientific discoveries in pediatric cancer and structural birth defects

The portal brings together a diverse group of patients, researchers, and clinicians, partnering together to create the largest database of pediatric genomic data and provides the necessary tools and computational resources for analysis and interpretation of these complex data. This information will be used to advance personalized medicine for the detection, therapy, and the management of childhood cancer and structural birth defects.

Data Portal Features

The portal strives to make data as accessible as possible and the user experience as seamless as possible.

Feature List

About the Research

A number of disease areas have been selected during 2015, 2016, and 2017 and will be available on the portal as the datasets are made available.

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