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The Childhood Cancer Survivor Study: An Overview

Nearly 12 million cancer survivors are alive in the United States, at least 328,000 of whom were originally diagnosed when they were under the age of 21. Advances in cancer treatment mean 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 cancer treatment are known as late effects. (For more information, see Late Effects of Treatment for Childhood Cancer.) The Childhood Cancer Survivor Study (CCSS), funded by the National Cancer Institute, was started in 1994 to better understand these late effects. Leslie Robison, Ph.D., of the St. Jude Children’s Research Hospital in Memphis, Tenn., is the principal investigator for this research study.

Childhood cancer survivors originally diagnosed between 1970 and 1986 were identified for this long-term, retrospective cohort study by researchers from over 20 participating centers in the United States and Canada. More than 14,000 survivors were initially surveyed and followed for long-term health outcomes. In addition, about 4,000 of their siblings were recruited as comparison (control) subjects. A list of participating research centers can be found on the CCSS website.

Researchers also gathered information from the survivors’ medical records. All the survivors had had at least one form of primary treatment – surgery, radiotherapy, or chemotherapy – or a combination of treatments.

Because treatment for childhood cancers has improved in recent decades, CCSS researchers began recruiting a second set of participants in 2007: 14,000 adults who had been treated for cancer as children between 1987 and 1999, and 4,000 of their siblings. 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 followed for five years, 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”.

The list below includes links to journal abstracts for just some of the most recent studies that have been published using data from the CCSS. A more comprehensive list can be found on the CCSS site.

Second Cancers and Other Medical Concerns

  • Radiation-related risk of basal cell carcinoma: A Report from the Childhood Cancer Survivor Study
    (Jul. 25, 2012, published online in Journal of the National Cancer Institute; see the journal abstract)
  • Fractures among long-term survivors of childhood cancer: A Report from the Childhood Cancer Survivor Study
    (May 17, 2012, published online in Cancer; see the journal abstract)
  • Chemotherapy and thyroid cancer risk: A Report from the Childhood Cancer Survivor Study
    (Jan. 2012, Cancer Epidemiology, Biomarkers & Prevention; see the journal abstract)
  • Long-term outcomes in survivors of neuroblastoma
    (Aug. 19, 2009, Journal of the National Cancer Institute; see the journal abstract)

Reproductive Complications

  • Congenital anomalies in the children of cancer survivors: a report from the Childhood Cancer Survivor Study
    (Jan. 20, 2012, Journal of Clinical Oncology; see the journal abstract)
  • Stillbirth and neonatal death in relation to radiation exposure before conception: a retrospective cohort study
    (Aug. 21, 2010, Lancet; see the journal abstract)
  • Ovarian failure and reproductive outcomes after childhood cancer treatment
    (May 10, 2010, Journal of Clinical Oncology; see the journal abstract)
  • Fertility of male survivors of childhood cancer
    (Jan. 10, 2010, Journal of Clinical Oncology; see the journal abstract)
  • Fertility of female survivors of childhood cancer
    (Jun. 1, 2009, Journal of Clinical Oncology; see the journal abstract)

Psychosocial Issues and Health-Related Behaviors

  • Screening and surveillance for second malignant neoplasms in adult survivors of childhood cancer
    (Oct. 5, 2010, Annals of Internal Medicine; see the journal abstract)
  • Psychological status in childhood cancer survivors
    (May 10, 2009, Journal of Clinical Oncology; see the journal abstract)

Smoking Cessation

  • Long-term smoking cessation outcomes among childhood cancer survivors
    (Jan. 1, 2009, Journal of Clinical Oncology; see the journal abstract)

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  • Posted: January 10, 2007
  • Updated: June 6, 2012