ACPA was invited to join a Patient & Foundation Workshop informing the development of the Gabriella Miller Kids First Pediatric Research Program’s data resource center. This program, commonly referred to as Kids First, is an NIH-funded initiative intended to generate increased opportunity in advancing research through widely-available, large-scale data. Specifically, Kids First will provide a repository for vast amounts of genetics data on structural birth defects and childhood cancer. Their work will allow researchers everywhere to better understand the developmental biology behind these conditions.
Kids First is dedicated to making this research effort relevant to patients, families and foundations as well. ACPA is honored to be involved in providing feedback in the formative stages of the Kids First resource development. The impact of this data initiative will be even greater as it bridges from the research community to the organizations and families directly impacted by the conditions being studied.
Last week Kids First announced the availability of whole genome sequence data for the “Discovery of the Genetic Basis of Structural Heart and Other Birth Defects” project (Accession Number: phs001138.v1.p2) here on NIH’s Database of Genotypes and Phenotypes (dbGaP).
This Kids First cohort selected for sequencing in 2015 is a sub-study of Pediatric Cardiac Genomics Consortium (PCGC) Study. This cohort was selected for further sequencing in 2016 and that data will be made available in the future. Additional datasets from childhood cancer and other structural birth defects patient cohorts selected through their X01 projects are forthcoming.
We look forward to the important contributions Kids First will make to studies in cleft and craniofacial genetics.