What kind of services do colon cancer registries offer to patients?
The Sandra Rosenberg Registry for Hereditary and Familial Colon Cancer offers the following services:
- Access to screening services
- Genetic testing and counseling
How are colon cancer registries structured?
The components of a registry include a surgical director, a medical director, colorectal surgeons, medical oncologists, gastroenterologists and registry administrator that manage the entire range of conditions resulting from the syndrome.
The surgical director has special expertise in the management of hereditary colorectal cancer syndromes. The registry administrator organizes and conducts daily activities (patient contact, scheduling and correspondence) and special programs of the registry.
What are the benefits of a colon cancer registry?
The benefits of a registry for hereditary colon cancer syndromes are great. These benefits are realized by patients, their families and society as a whole.
Individual patients benefit from involvement in a registry by receiving expert medical advice based on thorough knowledge of, and experience with, these syndromes. This includes the following:
- Patient education in understanding the condition
- Appropriate cancer screening recommendations
- Guidance of medical care through lifelong contact
- Referral to appropriate resources for managing nonmedical concerns associated with the syndrome
Family benefits include the following:
- Early identification of at-risk relatives
- Guidance in proper cancer screening activities
- Addressing family planning concerns
One of the greatest impacts of a registry is its ability to identify distant relatives at risk for a particular syndrome and reduce the incidence of cancer in these individuals by ensuring that these individuals at risk are identified, screened and treated in a timely fashion.
Finally, society has and will continue to benefit from research done in these syndromes. For example, research in familial adenomatous polyposis has advanced our understanding of the molecular events underlying the development of cancer in that syndrome. These advances have also been applicable to nonhereditary colorectal cancer as well as familial colorectal cancer in the Ashkenazi Jewish population.
We may ultimately use this knowledge of the genetic and molecular pathway to cancer to identify ways to interrupt the pathway and prevent colorectal cancer.
Who is eligible to join a cancer registry?
Anyone with a strong family history of cancer (more than two close relatives with the disease) may contact the registry to discuss their family history with a coordinator to determine if they are eligible to join the registry.
What is the cost for using the colon cancer registry?
There is no additional cost for genetic counseling with your colon and rectal surgeon during your visit. However, there is a cost for the genetic testing.
Usually the patient who has been diagnosed with cancer will be the first family member tested. This initial fee is somewhat higher than the rest of the family members. Most of the testing is covered by insurance policies depending on your specific contract. In some cases, you will need a letter of necessity.
This will all be discussed during the initial genetic testing consultation.
How is my information used? Will it be kept confidential?
All information obtained by the registry will be kept strictly confidential.
How can I join a cancer registry?
To join the Sandra Rosenberg Registry for Hereditary and Familial Colon Cancer or for more information, please call (312) 942-6500.