Cooperative Family Registry for Colorectal Cancer StudiesNational Cancer Institute Though scientists have known for decades that some families are prone to cancers of the colon, the reasons remained unclear until recently. Thanks to revolutionary advances in studying human DNA, researchers now have discovered several genes that are passed from generation to generation in altered forms, making family members susceptible to colon cancer, often at an early age. Follow-up laboratory and population studies of these genes have yielded many invaluable clues about their precise role in the disease, information that otherwise would have been difficult to obtain.  However, an understanding of the genetics of colon cancer is still far from complete. One of the great challenges is to study the effects of these genes in a broader cross-section of families at high risk for colon cancer. These studies will explain in much greater detail how these genes actually influence one's cancer risk. For example, studies in a large population of people will tell us about the frequency and approximate risk associated with specific gene mutations, key information in presymptomatic testing for susceptibility to colon cancer. These studies also will begin to tease out the modulating effect of dietary or environmental factors in causing colon cancer. Therefore, they will also help to identify factors that alter risk, key information in preventing or delaying the onset of the disease. Before probing these complex questions, like building a house, one has to lay a foundation. Scientists must assemble the necessary research infrastructure to facilitate the rapid and systematic search for answers to these questions. NCI recently took a major step toward putting this foundation firmly into place with the launch of the approximately $6 million Cooperative Family Registry for Colon Cancer Studies. Registries Beginning their initial field studies in the Fall of 1998, these registries perform several tasks that are critical to the future success of research on inherited colon cancer. These include: - Registry of families: It has been said that families are the lifeblood of genetic research. Without them, the research simply could not proceed. The six registries, in collaboration with scientists affiliated with other research institutions, will assemble and maintain comprehensive lists of families with histories of colon cancer. These lists will distinguish between the primary forms of inherited colon cancer, including familial adenomatous polyposis syndromes and hereditary non-polyposis colon cancer. - Family histories: As researchers discover more about the precise causes of familial colon cancer, their research questions will become increasingly more targeted. In anticipation of this increased specificity, the registries will collect detailed information about a variety of factors involved in the cancer process. These include race and ethnicity, diet, lifestyle, and other factors. - Biospecimens: The registries will serve as a storehouse of blood samples and tumor biopsies from family members that can then be used for research purposes. All samples will be collected according to a standardized protocol, while also protecting the privacy of those providing the materials. Although the registries are housed at six distinct sites, each site represents a resource for the entire research community. That is, scientists throughout the world who study colorectal cancer are encouraged to use these registries as platforms to formulate new research questions and hasten discovery. At the same time, these facilities provide a network of resources that allow scientists to interact with each other and channel their different areas of expertise in collaborative investigations.
For more information, or to contact National Cancer Institute, see their website at: www.cancer.gov |
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