The Gabriella Miller Kids First Pediatric Research Program ("Kids First") is a federally-funded set of research projects whose mandate is to identify underlying causes of pediatric cancers and congenital birth defects.
Kids First was signed into law in 2014, allocating funds to the Common Fund of the National Institutes of Health (NIH) for its creation. Since then, the program has enrolled over 30,000 participants from 44 different studies, each focused on a particular type of pediatric cancer or birth defect.
Being born with a birth defect is a risk factor for childhood cancer (see scientific studies by Lupo et al., 2015; Johnson et al., 2017). That is to say, children born with birth defects are more likely to develop childhood cancer than those that are not. This suggests that the same underlying genetic causes may result in these two seemingly different phenomena.
Because each individual type of pediatric cancer and birth defect is relatively rare, studying them together increases the likelihood of discovering variants in participants' genomes associated with these diagnoses. This is often the first step toward developing treatments for these conditions.
The Children's Brain Tumor Tissue Consortium (CBTTC) is an international collaboration of researchers "providing free and open access data to find a cure for pediatric brain cancer." The CBTTC is funded through the generosity of research foundation partners who share the belief of accelerating discoveries through collaboration rather than competition.
The CBTTC collects and shares clinical data (such as diagnoses and medical reports), genomic data (such as sequences and variants), and imaging data (such as radiology and histology images) with members to speed the rate of discovery and improve patient outcomes. The CBTTC also stores more than 40,000 patient tissue samples associated with these data types which are available to members upon request for further analysis.
The Kids First Data Resource Portal ("The Portal") was launched in September of 2018 as the one website for hosting data released through the Kids First program. More than just a storage space, the Portal includes several tools for searching through information in the database. These include...
Beyond searching and viewing files, the Portal is also connected to Cavatica - a powerful cloud computing service that allows researchers to study and analyze the data online with collaborators.
Sharing a similar research mission as Kids First, the CBTTC's data are also hosted on and searchable through the Portal.
For further explanation, we recommend the Genomics 101 website, written by the NIH's National Human Genome Research Institute.