The CCSS is a component of the Long Term Follow Up Study, began in 1994 and is a collaborative, multi-institutional study funded by a grant from the National Cancer Institute (U24 CA55727) of the National Institutes of Health and funds from ALSAC, St. Jude fundraising organization. The CCSS is composed of individuals who survived five or more years after diagnosis for cancer, leukemia, tumor, or similar illness diagnosed during childhood or adolescence.
The CCSS, which includes all participants in the Long Term Follow Up Study with a confirmed diagnosis of cancer, is a retrospectively ascertained cohort of 20,346 childhood cancer survivors diagnosed between 1970 and 1986. It also includes approximately 4,000 siblings of survivors who serve as the comparison group for the study.
Due to the significant changes in therapy for children with cancer over the past several decades, recruitment is currently underway to expand the Long Term Follow Up Study to include approximately 15,000 survivors of childhood cancer diagnosed between 1986 and 1999 and an additional 4,000 siblings of survivors who serve as the comparison group. Recruitment of this expanded cohort is facilitated through the use of a Business Associate partner, Department of Preventive Medicine at the USC School of Medicine (Los Angeles, CA) ensuring compliance with HIPAA requirements during the recruitment phase.
The CCSS cohort has been assembled through the efforts of 27 participating centers in the United States and Canada. It is coordinated through St. Jude Children’s Research Hospital in Memphis, Tennessee. Other core facilities include the Statistical Center, located at the Fred Hutchinson Cancer Research Center (Seattle, WA); the Biopathology Center (Columbus, OH); the Molecular Center (Cincinnati, OH); and the Radiation Physics Center at M.D. Anderson Cancer Center (Houston, TX).
