Childhood Cancer Data Initiative (CCDI): Integrating Longitudinal Clinical, Sociodemographic and Genomic Data into the NCCR

The goal of this study is to contribute clinical and genomic data from a large institutional cohort of pediatric cancer patients who had tumor genomic profiling between 2013 and 2019 at Dana-Farber/Boston Children's Hospital Cancer and Blood Disorders Center. Clinical data include demographics, diagnosis (classified according to the International Classification of Diseases for Oncology (ICD-O-3.2), stage, and biospecimen associated data. Tumors were sequenced with OncoPanel, a targeted next-generation DNA sequencing panel of up to 447 cancer genes for detection of single-nucleotide variants (SNV), insertions, and deletions, and copy number alterations (CNA), as well as selected intronic regions for up to 60 genes for the detection of structural variants (SV). This dataset includes a patient and sample identifier (GENIE ID) that can be used to link the genomic data included in this dataset to additional longitudinal clinical cancer data on a subset of patients that was submitted to the National Childhood Cancer Registry (NCCR). ]]>
Inclusion: All patients seen at Dana-Farber/Boston Children's Hospital Cancer and Blood Disorders Center with a suspected or confirmed cancer were eligible to participate in the Profile Cancer Research Study starting in 2013. There was no age limit, and patients were considered pediatric if they were seen by a pediatric provider. This dataset includes patients with intracranial solid tumors or extracranial solid tumors enrolled on the Profile Study and consented to data sharing with successful tumor sequencing between September, 2013, and March, 2019. Exclusion: The following patients enrolled on the Profile Study are not included in this dataset: Patients who did not consent to data sharing Patients with Hematologic Malignancies or benign tumors Patients who did not have successful tumor sequencing were not included in this dataset ]]>