Study design and cohort characteristics of the Childhood Cancer Survivor Study: a multi-institutional collaborative project.
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.


METHODS
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.


CONCLUSIONS
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.
Robison
Leslie L
LL
Department of Pediatrics, University of Minnesota, Minneapolis, Minnesota.
Mertens
Ann C
AC
Boice
John D
JD
Breslow
Norman E
NE
Donaldson
Sarah S
SS
Green
Daniel M
DM
Li
Frederic P
FP
Meadows
Anna T
AT
Mulvihill
John J
JJ
Neglia
Joseph P
JP
Nesbit
Mark E
ME
Packer
Roger J
RJ
Potter
John D
JD
Sklar
Charles A
CA
Smith
Malcolm A
MA
Stovall
Marilyn
M
Strong
Louise C
LC
Yasui
Yutaka
Y
Zeltzer
Lonnie K
LK
D000293:Adolescent; D000328:Adult; D000970:Antineoplastic Agents / Q000009:adverse effects / Q000627:therapeutic use; D002170:Canada; D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D005192:Family Health; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007223:Infant; D008297:Male; D009369:Neoplasms / Q000150:complications* / Q000188:drug therapy; D011379:Prognosis; D011795:Surveys and Questionnaires; D017741:Survivors; D014481:United States
D000970:Antineoplastic Agents