Cohort Profile: The Colon Cancer Family Registry Cohort (CCFRC)

Abstract

Why was the cohort set up?Colorectal cancer has long been one of the most frequently diagnosed cancers in the world, with an estimated 1.4 million new cases diagnosed each year (9.8% of worldwide cancer diagnoses) and the cause of 694 000 deaths (8.5% of all worldwide cancer deaths) in 2012. 1 In 1996, as a commitment to reduce morbidity and mortality from this disease, the National Cancer Institute (NCI) of the U.S. National Institutes of Health invited investigators to apply for funding to establish a 'Cooperative Family Registry for Colorectal Cancer Studies' (RFA: CA-96-011). The main NIH stated aims were: to collect pedigree information, epidemiological data and related biological specimens from participants with and without colorectal cancer and with and without a family history of the disease, as a resource for interdisciplinary studies on the aetiology of colorectal cancer; and to identify a population at high risk of colorectal cancer that could benefit from preventive strategies.

Cancer Risks for PMS2-Associated Lynch Syndrome

“…The study cohort from the Colon Cancer Family Registry has been described in detail elsewhere. [21][22][23] Between 1998 and 2012, the Colon Cancer Family Registry recruited families via population-based probands, recently diagnosed with colorectal cancer, in state or regional population cancer registries in the United States (Washington, California, Arizona, Minnesota, Colorado, New Hampshire, North Carolina, and Hawaii), Australia (Victoria), and Canada (Ontario). In addition, clinic-based probands were enrolled from multiple-case families referred to family cancer clinics in the United States (Mayo Clinic, Rochester, Minnesota and Cleveland Clinic, Cleveland, Ohio), Canada (Ontario), Australia (Melbourne, Adelaide, Perth, Brisbane, Sydney, and Newcastle), and New Zealand (Auckland).…”

Potential impact of family history–based screening guidelines on the detection of early‐onset colorectal cancer

“…We conducted a retrospective case‐control study of population‐based cases and controls aged 40 to 49 years with and without incident CRC who were enrolled in the multisite Colon Cancer Family Registry (CCFR) between 1998 and 2007. The design of the CCFR and process of evolution into the CCFR Cohort have been described in detail elsewhere 16,17 . Briefly, the CCFR was established to support studies of the etiology, prevention, and management of CRC.…”

“…Cases and unaffected controls were identified from population‐based and clinic‐based registries representing the spectrum of CRC risk. Baseline data collection for CRC cases and noncancer cases included detailed family history, diet and/or lifestyle questionnaires, clinical records, and biospecimens, which also have been detailed elsewhere 16,17 . Currently, the CCFR Cohort includes data from 42,489 participants from 15,049 families.…”

“…Population‐based cases were identified from population cancer registries, with some sites oversampling case families with a stronger family history of CRC. Population‐based controls were randomly sampled from the general population living in the population recruitment area using resources that included Medicare and driver's license files, telephone subscriber lists, or electoral roles 16,17 . Non–population‐based cases and controls, as well as participants for whom information regarding age at diagnosis were missing, were excluded.…”

The Impact of a Comprehensive Risk Prediction Model for Colorectal Cancer on a Population Screening Program

“…We calculated the distribution of predicted lifestyle risk using self-reported values for 10 factors from the Colorectal cancer RISk Predictor (CRISP) model ( 30 ) for 4747 control participants from the Australasian Colorectal Cancer Family Registry ( 31 ) who reported family history of CRC ( Supplementary Methods and Supplementary Table 1 , available online). Each person’s risk due to family history was based on number, degree of relatedness, and age at diagnosis of relatives with CRC ( Supplementary Methods , available online).…”