Strenghening and protecting families: How to handle the familial colorectal cancer risk—A prospective observational study in Upper Bavaria.

Abstract

427 Background: Lynch defines patients with familial colorectal cancer (CRC) risk as those with two or more first- or second-degree relatives (or both) with CRC. They make up about 20 percent of all CRC patients. Also, first degree relatives of CRC patients have an increased CRC risk. It is our goal to create population based data on familial CRC risk in a German population. Methods: Incident CRC cases in Upper Bavaria are collected and their family trees constructed. The patient’s relatives are documented by name, address and date of birth, but without health related information. Cancer history is added to a family by a record linkage procedure combining members of the family trees with cancer histories in the Munich CancerRegistry (MCR). A specific data protection concept guarantees anonymity for families and their cancer histories. Prevalence of familial CRC risk in upper Bavaria and the posterior probability of a family to carry CRC risk can be inferred from the anonymous data. Strength of simple familial CRC risk detection tools can also be assessed. Results: Per year, 141 clinical departments and 24 oncological practices report about 1300 incident CRC cases (below 70 years) to the MTR. Recruitment of patients started in September 2012. During the first year, we recruited 456 patients in 27 clinical departments and 6 oncological practices and contacted 1,600 relatives. Participation of relatives is reluctant in spite different information sources (leaflet, call center, internet) on the study purpose are provided. Record linkage creates an anonymous collection of CRC family histories. 37 families with a CRC patient below the age of 50 are recorded. They are recruited into a psycho-oncological substudy. First risk estimates will be available end of 2013. Conclusions: For the first time, the study offers population based data on familial CRC risk in a German population of 4.6 mio. people. The results strengthen the concept of familial CRC risk for the development of appropriate preventive screening strategies.