Childhood cancer and birth defects are leading causes of childhood death, and studies suggest that birth defects increase pediatric cancer risk. A recent published commentary from Dr. Alexandra Hudson and members of The NIH Common Fund’s Gabriella Miller Kids First Pediatric Research Program (Kids First) highlights how the program works to alleviate these conditions by building an expansive resource of genetic and clinical data. Better access to large amounts of clinical and genetic data, as provided by resources like this, allows researchers to more quickly and effectively analyze connections between conditions and identify new treatments to improve the quality of life for patients and their families. Hudson and the Kids First leadership team have shone light on the data and support provided by the Kids First Data Resource Center (DRC) and the Kids First Data Resource Center Data Resource Portal (Kids First Portal), which enables the public to review Kids First studies and request access to individual data.
The Kids First Program aims to collect, generate, and curate large amounts of genetic data from children and families afflicted with childhood cancer or birth defects and to make these data available and accessible to researchers, patients, and health-care professionals. One key component of this effort is the DRC Kids First Portal, which facilitates access and analysis of data collected and generated through the Kids First program. Through this publicly available portal, users can review available studies, data types, and curated clinical data and request access to individual-level, multifaceted data. This data is among the largest pediatric data resources of its kind and remains a unique resource for both pediatric cancers and birth defects data. The Kids First Portal currently contains 1.8 petabytes (or 1.8 million gigabytes) of data from more than 34,000 participants and connects with other available data using CAVATICA, a cloud-based analysis and sharing platform. The Kids First Portal will eventually provide access to more than 56,000 genomes from 41,000 patient and family participants from 70 childhood cancer and birth defect cohorts. Researchers have used Kids First data to investigate a variety of cancers and birth defects, and further funding opportunities are available. The Kids First Portal is a unique resource that unites pediatric cancer and birth defects to uncover their genetic causes and improve patients’ lives.
Source:
Alexandra Hudson, Marcia Fournier, James Coulombe, Danielle Daee, Using existing pediatric cancer data from the Gabriella Miller Kids First Data Resource Program, JNCI Cancer Spectrum, Volume 7, Issue 6, December 2023, pkad079, https://doi.org/10.1093/jncics/pkad079.
Read the article online.
