Interested in becoming a beta tester?

We are looking for volunteers in the Research, Health, and Patient & Foundation communities to be partnered beta-testers for the Data Resource Portal. In exchange for early-access, we will ask for feedback & engagement on features, functionality, and your overall experience in the DRP.

Note: By submitting this form you are indicating that you understand that you will be contacted for feedback about the portal which may be used for promotional purposes.

Beta Tester Registration Form

Please fill out the form to register & receive more information on beta testing.

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.

There are currently limited resources for researchers studying the underlying genetics of pediatric diseases.

Who is it for?

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


Biomedical researchers and data scientists interested in data analysis, cross-disease research, and real-time collaboration.

Community Member

Patients, families, and foundations interested in learning more about current research and connecting with researchers in specific disease areas.


Physician-scientists interested in finding the latest research to target patients’ needs based on genetic characteristics.

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.