New Directions		Question & Answer		Surgical Spotlight
Mother & Son		Importance of Registries		Helping Others
Research Update		Code of Silence		Patient Advocacy
Patient Perspective

Importance of the Colorectal Cancer Registries
Ellen McGannon, B.S.W.

Goal
The goal of the David G. Jagelman Inherited Colorectal Cancer Registries is straightforward: to prevent death from colorectal cancer. This goal can be accomplished through important medical advances, the aid of registries and an increase in the number of patients taking preventive steps. Inherited colorectal cancer is one of the best examples of a disease where patients and their families can benefit from all aspects of a registry.

Purpose
The David G. Jagelman Inherited Colorectal Cancer Registries, established in 1979 by David G. Jagelman, M.D., now comprises an integrated team of physicians, nurses, geneticists, genetic counselors, mental health professionals and data managers. The main purpose of the registries is three-fold: to promote knowledge of the risks and implications of having a family history of colorectal cancer; to provide the best care and education to patients and families; and to facilitate important research.

Functions
Most colon cancer registries follow patients and families with inherited syndromes of colorectal cancer, such as hereditary non-polyposis colorectal cancer (HNPCC) juvenile polyposis, and Peutz-Jehger’s syndrome. The Cleveland Clinic’s David G. Jagelman Inherited Colorectal Cancer Registries collect patients’ complete family histories, documented by medical records, to form the basis of individual risk and establish surveillance protocols. Demographic and medical information about affected family members is necessary to document polyps and cancer.

Facilitate surveillance. Through intimate contact with patients and families, the registry can build a trusting relationship, allowing for honest feelings and fears to be discussed and dispelled, and can steer patients to understand the importance of maintaining surveillance protocols for themselves and other family members.

Patient Advocate. The registry always has the patients’ and families’ welfare in mind. In addition to medical problems, many patients and families need assistance with other aspects of their lives affected by colorectal cancer, such as insurance, employment or social issues. For these things, patients and their families can rely on the registries as a resource.

Educational Source. Patients and their families need to be aware of how this condition will affect their lives and their families. Through booklets, newsletters and current articles from medical journals, patients can keep up with new studies and treatments.

Research Source. Registries with a large number of patients and families are an ideal place for conducting clinical and laboratory research. Upon enrollment, families are educated about the important roles that they will play in continuing research, allowing for a better understanding of the issues surrounding inherited risk.

For more information about the David G. Jagelman Registries, please call 216/444-6470 or 800/998-4785.