This Registry exists to identify and document cancer risk factors that run in Delaware families. Currently the registry contains information on approximately 900 families and some 31,000 individuals from Delaware and neighboring states who either have cancer or are at high risk for developing some form of the disease. The registry contains demographic information (age, sex, race, geographic residence and occupation), and documents cancers and other diseases present, as well as pertinent clinical data and follow-up, personal lifestyle, and genetic factors that can increase a person's risk for developing some types of cancer.
Zohra Ali-Khan Catts, MS, CGC, a full time genetics counselor at the HFGCC serves as project director of the FCRR Currently, she and her staff are working to build and incorporate all of the collected data into a comprehensive database which will list all family pedigrees including as many generations as possible. Once the data is updated, the plan is to analyze the data with the purpose of identifying families that have patterns of cancer that are consistent with hereditary cancer but do not have known gene mutations. For example, several families have been identified with a clear pattern of hereditary breast cancer but who are negative for all of the presently known mutations. This information will be used to develop new study ideas, such as new candidate gene search and epidemiological studies. It also will permit identification of any as yet unappreciated cancer clusters in the region that might be associated with environmental factors rather than genetics. Read about the registry in the news!
