Creating a cancer genetics database for the information age.

摘要

The purpose is to create a prototype for an inherited breast and ovarian cancer database for genetic centers that can serve as an organizational tool, a fiscal manager and a means to supply data for future research. With the resources of the NCI to support it, the SEER database is considered the standard for all cancer registries in the world (NYSCR, 2006) but the North American Association of Central Cancer Registries workshop concluded that one database cannot satisfy all users, maintain confidentiality, and be flexible enough to satisfy every potential uses (Izquierdo and Schoenbach, 2000). A strategic course is needed to shape cancer databases into a dynamic, multi-dimensional source of knowledge for the next century (Edwards and Bell, 2000). It is time the genetics community moves beyond reservations of privacy and confidentiality and begins to appreciate the necessity for a database in daily office functions. Ultimately a carefully planned database can help ease many burdens of a genetics center as well as shifting the focus of cancer genetics from the individual and into population-based care.