A Registry for Inherited Colorectal Cancer
Patients and families identified as having a dominantly inherited syndrome of colorectal cancer need education, support, and lifelong management of the clinical aspects of the syndrome. Although many such patients are strongly motivated to research their own condition and make full use of all resources available, they need expert care. Care of such families is a commitment that grows as family connections are unearthed and as new generations expand the numbers of potential patients. Who will be available to answer questions for the family, to help them arrange surveillance appointments, to issue reminders to forgetful relatives, to assist in dealing with insurance companies, to coordinate surgery? These are not functions of any single physician, but they fall under the umbrella of an organization formed specifically to carry them out; a Genetics department, Center or Registry.
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References and Recommended Reading
- Church JM, McGannon E. A polyposis registry: how to set one up and make it work. Sem Colon Rectal Surg, 1995;6: 48–54.Google Scholar