CCSS: Childhood Cancer Survivor Study

Description

The purpose of this study is to learn about the health of persons who were treated for cancer, leukemia, tumors, or other similar illness as children. We are interested in studying the possibility of second cancers, long-term effects of chemotherapy (cancer fighting drugs) and radiation therapy, and your child’s family history of cancer. Information collected will help researchers learn how to develop health programs for cancer survivors. 

The study involves completing a set of baseline questions about the child’s health. Additional questions will be asked if the survivor has had a baby, or if another member of your family has developed cancer. Children between the ages of 12 and 18 years will be asked to complete a short set of questions for teenagers. The information will be related to the child’s health habits.  The questionnaire will take about 45 minutes to complete. The questionnaire may be completed using the internet or by writing in the answers and returning the questionnaire in the mail.  About every other year, a shorter questionnaire will be mailed to the child for completion. These follow-up questionnaires may also be completed either through the internet or by mail.

In addition, outcomes or events of interest reported on the questionnaire may require a telephone interview to confirm event or outcome

The information gathered will be entered into a computer for comparison with other childhood survivors. All information will be kept private and patients will not be identified in any reports of this study. You may take part as long as you like and stop at any time.

Objectives

• Compare the quality of life of cancer survivors with the general population, particularly during the third and fourth decade of life
• To obtain data with relation to known treatments and factors related to the disease which might cause increased risk for the development of another cancer
• Better describe the long term effects of cancer treatments on the heart, lung, and reproductive systems
• Describe patterns of cancer within the families of the cancer survivor

Eligibility

• Newly diagnosed with cancer between January 1, 1970, and December 31, 1996
• Survival five years from diagnosis
• Age less than 21 years at the time of diagnosis of cancer
• English or Spanish speaking and living in the United States or Canada at the time of diagnosis

Principal Investigator

Greg Armstrong, MD