What is a hereditary colon cancer registry?
A hereditary colorectal cancer registry gathers and stores information on patients and families who have been diagnosed with, or are at risk for a hereditary colorectal cancer syndrome. Hereditary colorectal cancer syndromes are rare. The hereditary colon cancer syndromes that may be included in a registry are Familial Adenomatous Polyposis (FAP), MYH Associated Polyposis (MAP) Hereditary Non-Polyposis, Colorectal Cancer (HNPCC), Lynch Syndrome, Juvenile Polyposis (JP), and Peutz-Jehger’s Syndrome (PJ).
What does a hereditary colon cancer registry do?
Not all registries are the same; they may be new and contain a few families or old and containing hundreds of families. Registries may also provide different services. Depending on venue (academic versus community hospital), funding, leadership, and source of referrals (surgeons, oncologists, and/or geneticists) influence the purpose or mission of the registry and makeup of the registry team. Some registries may be research based; others may have a clinical/patient care focus; and some may be a combination of both.
Services a registry may provide include:
What are the benefits for patients and families?
Patients who have experienced a personal or family history of colon cancer may require special attention and support to deal with the short and long term effects of their diagnosis. Registry personnel often develop an ongoing relationship with their patients and act as a point of contact. Registries can educate patients and their family members about their particular syndrome and offer screening and surveillance recommendations. Some registries offer a multidisciplinary team of experts that can manage the complex medical care that patients diagnosed with a hereditary colorectal cancer syndrome need.
How can a registry help with patient care?
The primary care physician or specialist may not always have the time or sufficient resources to provide ongoing comprehensive medical care, support or education. A registry can identify which specialists (GI, colorectal surgeons, oncologists, medical geneticists, etc.) need to be brought in and arrange appointments. It can provide the patients with educational materials on hereditary colorectal cancer syndromes, screening and surveillance guidelines and treatment options. The registry can send reminder letters or call patients regarding surveillance tests as recommended by the physician. As the patient’s advocate, the registry can address questions and concerns then communicate them to the physician, or other resources to help provide the best care.
What is the mission of the registry?
Every registry should have a mission statement that puts into words what they hope to accomplish. The mission statement drives the Institutional Review Board (IRB) application, consent form, staffing, and focus. A clear mission statement is the basis from which all else is built. The basic registry mission should be to prevent death from colorectal cancer, and my also include the following goals:
Patient Care
Education
Research