Data Sharing

The Colon Cancer Family Registry (CCFR) has provided information on the data collected through our Registry to the NCI Cancer Epidemiology Descriptive Cohort Database.

In addition, we utilize 2 mechanisms for data sharing:

Mechanism 1: dbGaP 

In accordance with NOT-OD-03-32 and as allowed by respective CCFR center institutional policies, local IRB rules, as well as tribal, local, state and national laws and regulations, including the Privacy Rule, de-identified and cleaned datasets described below will be shared via Mechanism 1. 

CCFR data currently and soon to be available on dbGaP include:

  • phs002733.v1.p1 CCFR baseline survey data, including:
    • Cancer outcomes data including: site, histology, behavior, age of diagnosis, treatment for Colorectal Cancer (CRC) and source of cancer information
    • Personal/family history data (including vital status, vital status age, and cause of death)
    • Baseline epidemiology/risk factors including: epi risk factors, personal characteristics, personal histories for: alcohol consumption, tobacco use, physical activity, medication use, CRC screening, certain medical conditions (e.g., inflammatory bowel disease), surgeries, frequency of meat consumption and method of cooking, reproductive history (for women)
    • Family history of cancer including degree of relationship, site of cancer and age of diagnosis
    • Baseline Hawaii diet
    • Baseline Hawaii nutrient
    • Baseline Australia diet
  • phs000779.v1.p1: OFCCR SNP-CpG: Illumina HumanMethylation450 array and Affymetrix Human Mapping 100k and 500k arrays for ~1,100 population-based CRC cases and ~1,000 population-based controls from the Ontario CCFR.
  • phs001092.v1.p1: GECCO PMH_CCFR: Illumina HumanCytoSNP array for ~280 post-menopausal population-based CRC female cases and ~122 population-based controls from the Seattle CCFR.
  • phs001856.v1.p1: CORECT Axiom GWAS: Affymetrix Axiom array for ~1,600 CRC cases, ~700 population-based controls and ~670 CRC unaffected case family members, all of European ancestral heritage and from all CCFR sites except Hawaii and UCSF (minority) CCFR sites.
  • phs001903.v1.p1: CORECT OncoArray GWAS: Illumina Infinium OncoArray 500k BeadChip for ~2,000 CRC cases and 670 population-based controls of European ancestral heritage from all CCFR sites except the UCSF (minority) CCFR site.
  • phs002050.v2.p1: OICR: Molecular Pathological Epidemiology of Colorectal Cancer: Targeted sequencing of tumor and matched normal DNA samples from ~1,800 CRC cases from the Ontario and Seattle CCFR sites.
Data to be submitted to dbGaP in April 2023 for immediate release includes:
  • Phase V follow-up epidemiology/risk factors survey data including colorectal cancer screening, vital status, personal and family history of cancer information
  • CCFR characterization of new incident colorectal cancers (diagnosis data, germline mutations in DNA mismatch repair genes and MUTYH, somatic results of mismatch repair deficiency, BRAF, KRAS, and MLH1 promoter methylation)

Mechanism 2: Direct Sharing via Research Collaborations

To request to collaborate with the CCFR, please visit our Collaborations page.

As per Research Repositories, Databases, and the HIPAA Privacy Rule, deidentified data are available via Mechanism 2 and includes:

  • Cancer outcomes data including: site histology, behavior, age of diagnosis, treatment (for CRC) and source of cancer information
  • Personal/family cancer data (including vital status, vital status age, and cause of death)
  • Family structures (full pedigree)
  • Baseline epidemiology/risk factors survey data including: epi risk factors, personal characteristics, colorectal cancer screening, personal histories for alcohol consumption, tobacco use, physical activity, medication use, CRC screening, certain medical conditions (e.g., inflammatory bowel disease), surgeries, frequency of meat consumption and method of cooking, reproductive history (for women)
  • Colorectal cancer pathology abstraction data
  • Family history of cancer including degree of relationship, site of cancer and age of diagnosis
  • Five-yearly follow-up epidemiology/risk factors survey data including vital status, colorectal cancer screening data, personal and family history of cancer information
  • Colorectal malignancy (resection or biopsy pathology report abstraction)
  • Polyps (reported at resection or biopsy in pathology report)
  • Clinical diagnosis and treatment (medical record abstraction)
  • Germline (sequencing and MLPA) testing for these genes: MLH1, MSH2, MSH6, PMS2, EPCAM, MutYH
  • Tumor microsatellite instability (MSI) testing
  • Tumor immunohistochemistry (IHC) testing
  • Tumor BRAF p.V600E somatic mutation testing
  • Tumor KRAS codons 12 and 13 somatic mutation testing
  • Tumor CpG Island Methylator Phenotype (CIMP), by assessing quantitative methylation across five gene promoters (CACNA1G, IGF2, NEUROG1, RUNX3 and SOCS1)
  • Combined and harmonized GWAS dataset of the following GWAS: Illumina Human1M v1 and/or Illumina Human 1M-Duo (CCFR Set 1), Illumina HumanOmni1-Quad (CCFR Set 2), Affymetrix Axiom Array (CCFR Set 3) and Illumina Infinium OncoArray 500k BeadChip (CCFR Set 4)