title: Study design and cohort characteristics of the Childhood Cancer Survivor Study: a multi-institutional collaborative project.
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.
  
  
  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.
authors.affiliation: Department of Pediatrics, University of Minnesota, Minneapolis, Minnesota.
authors.forename: Leslie L
authors.initials: LL
authors.lastname: Robison
authors.forename: Ann C
authors.initials: AC
authors.lastname: Mertens
authors.forename: John D
authors.initials: JD
authors.lastname: Boice
authors.forename: Norman E
authors.initials: NE
authors.lastname: Breslow
authors.forename: Sarah S
authors.initials: SS
authors.lastname: Donaldson
authors.forename: Daniel M
authors.initials: DM
authors.lastname: Green
authors.forename: Frederic P
authors.initials: FP
authors.lastname: Li
authors.forename: Anna T
authors.initials: AT
authors.lastname: Meadows
authors.forename: John J
authors.initials: JJ
authors.lastname: Mulvihill
authors.forename: Joseph P
authors.initials: JP
authors.lastname: Neglia
authors.forename: Mark E
authors.initials: ME
authors.lastname: Nesbit
authors.forename: Roger J
authors.initials: RJ
authors.lastname: Packer
authors.forename: John D
authors.initials: JD
authors.lastname: Potter
authors.forename: Charles A
authors.initials: CA
authors.lastname: Sklar
authors.forename: Malcolm A
authors.initials: MA
authors.lastname: Smith
authors.forename: Marilyn
authors.initials: M
authors.lastname: Stovall
authors.forename: Louise C
authors.initials: LC
authors.lastname: Strong
authors.forename: Yutaka
authors.initials: Y
authors.lastname: Yasui
authors.forename: Lonnie K
authors.initials: LK
authors.lastname: Zeltzer
mesh_terms: 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
chemical_list: D000970:Antineoplastic Agents