US Flag logoAn official website of the United States government
Childhood Cancer Survivor Study
CCSS
Data Resource:  CCSS
Point of Contact:  
Gregory T. Armstrong, M.D., MSCE.,  
Project

About This Dataset
The Childhood Cancer Survivor Study (CCSS), a component of the Long-Term Follow Up Study that began in 1994 and was funded by a grant from the National Cancer Institute, includes all participants with a confirmed diagnosis of cancer and 5 year survival, a cohort of 35,923 childhood cancer survivors diagnosed between 1970 and 1999. It also includes over 5,000 siblings of survivors who serve as the comparison group for the study. The CCSS cohort has been assembled through the efforts of 31 participating centers in the United States and Canada. CCSS is a resource in which to investigate current and future questions regarding consequences of therapy, genetic associations, disease processes and causation, interventions, and quality of life among childhood cancer survivors. The Childhood Cancer Survivor Study (CCSS) includes all participants with a confirmed diagnosis of cancer and 5 year survival, a cohort of 35,923 childhood cancer survivors diagnosed between 1970 and 1999. The CCSS cohort has been assembled through the efforts of 31 participating centers in the United States and Canada. CCSS is a resource in which to investigate current and future questions regarding consequences of therapy, genetic associations, disease processes and causation, interventions, and quality of life among childhood cancer survivors. This dataset outlines the demographic, primary cancer and treatment characteristics of the Overall CCSS Cohort (the Expansion Cohort as of January 2021 plus the Original Cohort).
Core Data Elements
Number of Cases
25,735
Case Sex
Female (11,973); Male (13,762)
Case Age At Diagnosis
0 to 4 years (10,230); 5 to 9 years (5,794); 10 to 14 years (5,457); 15 to 19 years (4,252); Pediatric and Young Adult (<40 years) (2)
Case Race
American Indian or Alaska Native (155); Asian (417); Black or African American (1,710); Other (1,044); White (22,274); Unknown (135)
Case Ethnicity
Hispanic or Latino (2,065); Not Hispanic or Latino (23,005); Unknown (665)
Case Disease Diagnosis
Acute Lymphocytic Leukemia (6,646); Acute Myeloid Leukemia (930); Astrocytoma (2,695); Ewing's Sarcoma (741); Hodgkin Lymphoma (3,111); Kidney Tumors (2,279); Medulloblastoma/PNET (1,040); Neuroblastoma (1,955); Non-Hodgkin Lymphoma (2,119); Osteosarcoma (1,259); Other Bone Malignancy (103); Other CNS Malignancy (763); Other Leukemia (332); Soft Tissue Sarcoma (1,761); Not Reported (1)
Case Tumor Site
Not Reported (25,735)
Case Treatment Administered
Chemotherapy (2,630); Chemotherapy and Radiation Therapy (2,333); Chemotherapy and Surgery (5,516); Chemotherapy, Radiation Therapy, and Surgery (8,430); No Treatment (77); Radiation Therapy (68); Radiation Therapy and Surgery (2,009); Surgery (2,168); Unknown (2,504)
Additional Data Elements
DBGAP STUDY IDENTIFIER
DATA REPOSITORY
Grant Information
U24CA055727
Childhood Cancer Survivor Study
Published In
https://ccss.stjude.org/published-research/publications.html
Charts
Male (13,762); Female (11,973)
13,762Male