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Childhood Cancer Survivor Study (CCSS)
Childhood Cancer Survivor Study logo
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Sample details

The aim of the CCSS is to better understand the long-term effects of childhood cancer and its treatment, as well as determine the factors that increase the risk for adverse outcomes. Participants includes individuals recruited from 31 clinical centres across North America who survived five or more years after a cancer diagnosis during childhood or adolescence (< 21 years) and their siblings, who serve as a comparison group. The original cohort included over 14,000 people who had been diagnosed with cancer between 1970 and 1987, completing baseline assessment in 1994. The expansion cohort was added in 2008, including a further 11,000 people who were diagnosed with cancer between 1987 and 1999. Over 5,000 siblings are included in the study from baseline data collection in 1994. Participants have been followed up for the main study up to 8 times, with the most recent follow up in 2022. There have also been several ancillary studies, in addition to the main questionnaire and biological samples collected.

Study design
Cohort, Cohort - clinical, Biobank

Number of participants at first data collection

14,348 (original cohort)

11,387 (expansion cohort)

5,045 (sibling cohort)

Age at first data collection

Varied (original cohort)

Varied (expansion cohort)

Varied (sibling cohort)

Participant year of birth

Varied (original cohort)

Varied (expansion cohort)

Varied (sibling cohort)

Participant sex
All

Representative sample at baseline?
No

Sample features

Patients and clinical populations
Pediatric cancer patients
Relatives
Siblings
Dataset details
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Countries

Canada, United States of America

Year of first data collection

1994 (original cohort)

2008 (expansion cohort)

1994 (sibling cohort)

Primary Institutions

St. Jude Children's Research Hospital

Links

ccss.stjude.org/

dceg.cancer.gov/research/who-we-study/cohorts/childhood-cancer-survivors

doi.org/10.1200/jco.2009.22.3339

ltfu.stjude.org/

survivorship.stjude.cloud/

Profile paper DOI

doi.org/10.1002/mpo.1316

Funders

National Cancer Institute (NCI)

National Institutes of Health (NIH)

Ongoing?
Yes

Data types collected

mentalHealthData
dataLinkage
Quantitative data collection
  • Interview – phone
  • Physical or biological assessment (e.g. blood, saliva, gait, grip strength, anthropometry)
  • Secondary data
  • Self-report questionnaire – online
  • Self-report questionnaire – paper or computer assisted
Qualitative data collection
  • None
Neuroimaging data collection
  • None
Linked or secondary data
  • Healthcare data
Features

Engagement

  • Community engagement
  • Keywords

    Cancer
    Childhood cancer
    Genetics
    Health and wellbeing
    Mental health
    Neurocognition
    Sexual health and function
    Survivors
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