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Cited by 696

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Study design and cohort characteristics of the childhood cancer survivor study: A multi‐institutional collaborative project

Robison, Leslie L., Mertens, Ann C., Boice, John D., Breslow, Norman E., Donaldson, Sarah S., Green, Daniel M., Li, Frederic P., Meadows, Anna T., Mulvihill, John J., Neglia, Joseph P., Nesbit, Mark E., Packer, Roger J., Potter, John D., Sklar, Charles A., Smith, Malcolm A., Stovall, Marilyn, Strong, Louise C., Yasui, Yutaka, Zeltzer, Lonnie K.·2002·Medical and Pediatric Oncology

Abstract

Background: 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. Procedure: 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. Results: 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. Conclusion: 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.

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Metadata

Authors
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., & Zeltzer, L. K.
Venue
Medical and Pediatric Oncology
Publisher
Wiley
Published
2002-03-12
Volume
38
Issue
4
Pages
229-239
ISSN
  • 0098-1532 (ISSN-L)
  • 1096-911X
OpenAlex
W2041344443
Cited by
696
References
17
FWCI
20.81
Type
journal article
Language
en
Open access
closed

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CoChat. (2026). Citation check: Study design and cohort characteristics of the childhood cancer survivor study: A multi‐institutional collaborative project. https://app.cochat.ai/papers/10.1002/mpo.1316
The paper
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., & Zeltzer, L. K. (2002). Study design and cohort characteristics of the childhood cancer survivor study: A multi‐institutional collaborative project. Medical and Pediatric Oncology. https://doi.org/10.1002/mpo.1316

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Contains information from the Semantic Scholar Academic Graph Datasets, made available under the ODC Attribution License (ODC-BY 1.0).

Semantic Scholar’s data is described in: Kinney, R., et al. (2023). The Semantic Scholar Open Data Platform. arXiv:2301.10140.