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The Childhood Cancer Survivor Study: An Overview
    Posted: 01/10/2007    Updated: 03/04/2008
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More than 10 million cancer survivors are alive in the United States, at least 270,000 of whom were originally diagnosed when they were under the age of 21. Advances in cancer treatment have meant that today almost 80 percent of children diagnosed with cancer are alive at least five years after diagnosis. Many ultimately will be considered cured. As a consequence, interest is growing in the long-term health of these survivors.

Health problems that develop years later as a result of a survivor’s original cancer treatment are known as late effects. (For more information, see Late Effects of Treatment for Childhood Cancer.) The Childhood Cancer Survivor Study (CCSS) was started in 1993 to better understand these late effects. Les Robison, Ph.D., of the St. Jude Children’s Research Hospital in Memphis Tenn., is the principal investigator.

Childhood cancer survivors originally diagnosed between 1970 and 1986 were identified for this long-term, retrospective cohort study taking place at 27 participating research centers in North America and Canada. More than 14,000 survivors were initially surveyed and followed for long-term health outcomes.

Researchers also gathered information from the survivors’ medical records. All the participants had had at least one form of primary treatment – surgery, radiotherapy, or chemotherapy – or some combination of these. In addition, about 3,700 of their siblings were recruited as comparison (control) subjects.

Treatment for childhood cancers has improved since 1986, says Barry Anderson, M.D., scientific coordinator for the CCSS at the National Cancer Institute, which funded the study. So beginning in 2007, CCSS researchers will recruit a second set of participants: 14,000 adults who were treated for cancer as children between 1987 and 1999. It’s possible that late effects for this more recently treated group will differ in kind or severity from those in the first cohort of CCSS participants.

Until the expanded cohort has been recruited and followed for five years, however, all of the studies coming out of the CCSS will be based on survivors who were treated before 1986.

Researchers who have studied the CCSS data so far have identified a number of potential late effects, including premature menopause, stroke, and second cancers. Childhood cancer survivors should get close, long-term follow-up from doctors who know about these kinds of complications, say experts. To address this issue, the Children’s Oncology Group (COG) has prepared a resource for physicians called "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers" (see the guidelines).

The list below includes links to journal abstracts for just some of the studies that have been published using data from the CCSS study.

  • Cause-specific mortality and second cancer incidence after non-Hodgkin lymphoma
    (February 7, 2008, epub ahead of print, Blood; see the journal abstract).
  • Behavioral and social outcomes in adolescent survivors of childhood cancer
    (Aug. 20, 2007, Journal of Clinical Oncology; see the journal abstract).
  • Stroke among long-term survivors of childhood leukemia and brain tumors
    (Nov. 20, 2006, Journal of Clinical Oncology; see the journal abstract).
  • Preterm birth and low birth weight children of female survivors of childhood cancer
    (Oct. 18, 2006, Journal of the National Cancer Institute; see the journal abstract)
  • Chronic health conditions in survivors of childhood cancer
    (Oct. 12, 2006, New England Journal of Medicine; see the journal abstract)
  • Premature menopause in survivors of childhood cancer
    (July 5, 2006, Journal of the National Cancer Institute; see the journal abstract)
  • Risk of selected subsequent carcinomas in survivors of childhood cancer
    (Jan. 20, 2006, Journal of Clinical Oncology; see the journal abstract)
  • Stroke as a late treatment effect of Hodgkin’s disease
    (Sept. 20, 2005, Journal of Clinical Oncology; see the journal abstract)
  • Minority adult survivors of childhood cancer: a comparison of long-term outcomes, health care utilization, and health-related behaviors
    (Sept. 20, 2005, Journal of Clinical Oncology; see the journal abstract)

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