Seattle Familial Colorectal Cancer Registry

Principal Investigator (PI): Polly A. Newcomb PhD MPH

The Seattle Colorectal Cancer Family Registry (Colon CFR for short) is one of six sites in the Cooperative Family Registry for Colorectal Cancer Studies. This international registry provides an extensive organizational framework for facilitating studies of colon cancer. The Colon CFR works to identify the genetic and molecular patterns of cancer occurrence, as well as the disease's behavioral implications. The Colon CFR is one of the largest resources of interview and biospecimen data used by researchers to investigate the origins of colorectal cancer.

The CFR's long-term goal is to investigate the ways in which genetic and environmental factors either interact with, or contribute independently to, the incidence of colon and rectal cancers. The Seattle CFR investigators began their work by establishing a population-based registry of three groups:

• persons with colorectal cancer (from information obtained by the system that monitors Puget Sound-area cancer incidence
• relatives of those with colorectal cancer
• controls (people randomly selected from population lists).

Now known to study participants as the CORE (Colorectal Research in Epidemiology) Studies, the investigators have enrolled more than 2,300 people diagnosed with colorectal cancer, more than 5,400 of their relatives, and more than 1,900 controls.

Participation in the CORE Studies begins the data collection process by conducting extensive epidemiological interviews. These surveys include questions about family and medical history, reproductive history, risk factor measures, diet, exercise, and demographics. In addition, the CORE Studies also requests biological specimens from most participants. These requests come in the form of asking for blood samples (or buccal samples from cheek cells), diagnostic slides, and archived tumor blocks. To round out the picture, CORE staff request permission to gain access to medical records which indicate the course and impact of various procedures and treatments.

Researchers from around the world are encouraged to use this rich resource to further the long-term goals of the registry. There have been many studies conducting tests at the population and molecular level, to illuminate colorectal cancer's causes and influences. Smaller-scale studies include evaluation of people's perceived risk of colorectal cancer risk, efficacy of screening tests such as colonoscopies, and cost-effectiveness models for the type and frequency of screening methods.

Our recently funded renewal application will include the recruitment of families at high risk for colorectal cancer, along with conducting follow-up interviews of selected participants enrolled to date. The investigators look forward to continue their role in the international CFR consortium, and to participate in future studies utilizing this resource.

Contact: Douglass Fisher, MA. Project Manager, Seattle CFR. (206)-667-6481.