Study design and cohort characteristics of the childhood cancer survivor study: A multi-institutional collaborative project
Article first published online: 12 MAR 2002
Copyright © 2002 Wiley-Liss, Inc.
Medical and Pediatric Oncology
Volume 38, Issue 4, pages 229–239, April 2002
How to Cite
Robison, L. L., Mertens, A. C., Boice, J. D., Breslow, N. E., Donaldson, S. S., Green, D. M., Li, F. P., Meadows, A. T., Mulvihill, J. J., Neglia, J. P., Nesbit, M. E., Packer, R. J., Potter, J. D., Sklar, C. A., Smith, M. A., Stovall, M., Strong, L. C., Yasui, Y. and Zeltzer, L. K. (2002), Study design and cohort characteristics of the childhood cancer survivor study: A multi-institutional collaborative project. Med. Pediatr. Oncol., 38: 229–239. doi: 10.1002/mpo.1316
- Issue published online: 12 MAR 2002
- Article first published online: 12 MAR 2002
- Manuscript Accepted: 4 SEP 2001
- Manuscript Received: 6 MAR 2001
- National Cancer Institute of the NIH. Grant Number: U24 CA55727
- Children's Cancer Research Fund (to University of Minnesota Cancer Center)
- childhood cancer;
- adolescent cancer;
Increased attention has been directed toward the long-term health outcomes of survivors of childhood cancer. To facilitate such research, a multi-institutional consortium established the Childhood Cancer Survivor Study (CCSS), a large, diverse, and well-characterized cohort of 5-year survivors of childhood and adolescent cancer.
Eligibility for the CCSS cohort included a selected group of cancer diagnoses prior to age 21 years between 1970–1986 and survival for at least 5 years.
A total of 20,276 eligible subjects were identified from the 25 contributing institutions, of whom 15% are considered lost to follow-up. Currently, 14,054 subjects (69.3% of the eligible cohort) have participated by completing a 24-page baseline questionnaire. The distribution of first diagnoses includes leukemia (33%), lymphoma (21%), neuroblastoma (7%), CNS tumor (13%), bone tumor (8%), kidney tumor (9%), and soft-tissue sarcoma (9%). Abstraction of medical records for chemotherapy, radiation therapy, and surgical procedures has been successfully completed for 98% of study participants. Overall, 78% received radiotherapy and 73% chemotherapy.
The CCSS represents the largest and most extensively characterized cohort of childhood and adolescent cancer survivors in North America. It serves as a resource for addressing important issues such as risk of second malignancies, endocrine and reproductive outcome, cardiopulmonary complications, and psychosocial implications, among this unique and ever-growing population. Med. Pediatr. Oncol. 2002;38:229–239. © 2002 Wiley-Liss, Inc.