US Flag logoAn official website of the United States government
National Childhood Cancer Registry Data Platform
CCDI
Data Resource:  CCDI
Point of Contact:  
NCIChildhoodCancerDataInitiative@mail.nih.gov,  
Registry

About This Dataset
The NCCR Data Platform includes data from individuals diagnosed with an initial cancer under age 40 residing in any 18 NCCR registry for cancers reported from 1995 to 2021 from the following Central Cancer Registries: California (Greater Bay, Greater California, Los Angeles), Colorado, Connecticut, Georgia, Hawai'i, Idaho, Illinois, Iowa, Kentucky, Louisiana, Massachusetts, Michigan, New Jersey, New Mexico, New York, Seattle-Puget Sound, Tennessee, Texas, Utah, and Wisconsin. These NCCR registries represent 58% of all U.S. children, adolescents, and young adults aged 0-39 based on the 2020 U.S. population. In addition to registry data, the Data Platform supports exploration of data from other sources like pharmacy and medical claims, social drivers of health, Children's Oncology Group, Virtual Pooled Registry, and electronic health record systems and other clinical information systems from treating facilities that provide more in-depth information on the patient's cancer journey and survivorship. Researchers can use the Data Platform to submit requests for custom datasets for analysis and visualize aggregate statistics about available data for hypothesis generation and planning study designs. An individual person may have multiple cancers over their life course. For this reason, the total Case Age at Diagnosis and Case Disease Diagnosis counts are greater than the case count. The Case Age at Diagnosis count greater than 39 years represent subsequent diagnoses.
Core Data Elements
Number of Cases
1,433,710
Case Sex
Female (865,298); Male (568,412)
Case Age At Diagnosis
0 to 4 years (73,654); 5 to 9 years (43,116); 10 to 14 years (51,186); 15 to 19 years (85,392); 20 to 24 years (135,692); 25 to 29 years (220,987); 30 to 34 years (347,259); 35 to 39 years (531,018); Greater than 39 years (55,148)
Case Race
American Indian or Alaska Native (7,167); Asian (84,836); Black or African American (151,493); White (879,456); Not Reported (286,135); Unknown (24,623)
Case Ethnicity
Hispanic or Latino (286,135); Not Hispanic or Latino (1,147,575)
Case Disease Diagnosis
CNS and Miscellaneous Intracranial and Intraspinal Neoplasms (166,868); Germ Cell Tumors, Trophoblastic Tumors and Neoplasms of Gonads (124,757); Hepatic Tumors (9,817); Leukemias, Myeloproliferative and Myelodysplastic Diseases (115,868); Lymphomas and Reticuloendothelial Neoplasms (154,311); Malignant Bone Tumors (21,112); Neuroblastoma and Other Peripheral Nervous Cell Tumors (12,078); Not Classified by SEER or In Situ (130,700); Other and Unspecified Malignant Neoplasms (14,580); Other Malignant Epithelial Neoplasms and Malignant Melanomas (689,907); Renal Tumors (37,686); Retinoblastoma (4,191); Soft Tissue and Other Extraosseous Sarcomas (61,577)
Additional Data Elements
DATA REPOSITORY
Charts
Female (865,298); Male (568,412)
865,298Female