US Flag logoAn official website of the United States government
Childhood Cancer Survivor Study
St. Jude Cloud
Data Resource:  St. Jude Cloud
Point of Contact:  
Clay McLeod ; Jinghui Zhang,  
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
2,912
Case Sex
Female (1,531); Male (1,381)
Case Age At Diagnosis
0 to 4 years (1,027); 5 to 9 years (701); 10 to 14 years (704); 15 to 19 years (444); 20 to 24 years (36)
Case Race
American Indian or Alaska Native (11); Black or African American (118); White (1,506); Not Reported (277)
Case Ethnicity
Hispanic or Latino (286); Not Hispanic or Latino (2,596); Not Reported (30)
Case Disease Diagnosis
Acute Lymphoblastic Leukemia (499); Acute Myeloid Leukemia (90); Central Nervous System (CNS) (737); Ewing Sarcoma Family of Tumors (92); Hodgkin Lymphoma (339); Neuroblastoma (234); Non-Hodgkin Lymphoma (277); Osteosarcoma (138); Other Bone Tumors (20); Other Leukemia (58); Soft Tissue Sarcoma (148); Wilms Tumor (280)
Case Tumor Site
Not Reported (2,912)
Number of Samples
2,912
Sample Assay Method
Whole Genome Sequencing (2,912)
Additional Data Elements
DATA REPOSITORY
Grant Information
U24CA055727
Childhood Cancer Survivor Study
PROGRAM ID
RFA-CA-15-502
Published In
https://ccss.stjude.org/published-research/publications.html
SAMPLE TYPE
Germline (2,912);  
Charts
Female (1,531); Male (1,381)
1,531Female