The Registry for Inherited or Hereditary Colorectal Cancer
What Is a Colorectal Cancer Registry?
Expertise in managing inherited colorectal cancer is concentrated in a few centers around the country. These centers maintain a list, or registry, of patients and their families with inherited syndromes that lead to colorectal cancer, such as hereditary nonpolyposis colorectal cancer (HNPCC), familial polyposis, and Peutz-Jegher's syndrome. Cancer registries collect and manage information about family history, biological specimens, and information specific to each family's health history.
How Can a Colorectal Cancer Registry Help Me?
A cancer registry is designed 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.
Patient care. The most important role of a registry is patient care. The first step to joining a cancer registry is to discuss the registry with you and your family, and to have you sign a consent form that permits registry personnel to contact other relatives and obtain medical records from other hospitals. This will enable registry personnel to construct an accurate family tree, called a pedigree, that tells the story of cancer in the family. This pedigree is the key to sorting out who in the family is at risk, how strong the risk is, and what needs to be done. Registry personnel coordinate testing, appointments, and treatments. They may also give advice about insurance concerns, payment problems, or any other problems that arise related to the condition.
Education. You and your family need to be aware of how this condition will affect your lives. Through booklets, newsletters, and current articles from medical journals, you can keep up with new studies and treatments. Registries also take part in programs to educate doctors about the complexities of inherited colorectal cancer.
Research. You and your family members may be asked to take part in various research projects aimed at improving the care of all patients and families with the disease. Registries lead the way in this research because they have access to large numbers of patients. Many safeguards built into the research process protect patients against harm. National and international groups allow registries and their workers to share ideas and collaborate on studies with other registries around the world.
Colorectal Cancer Registries Also:
- Facilitate screening. Through intimate contact with affected 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 screening requirements for themselves and other family members.
- Serve as patient advocates. Registries have the welfare of you and your family 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, you can rely on the registries as a resource.
Who Is Eligible to Join a Colorectal Cancer Registry?
Anyone with a strong family history of colorectal cancer (more than two close relatives with the disease) may join the inherited cancer registry.
Will My Information Remain Confidential?
The confidentiality of patients enrolled in a colorectal cancer registry is protected. The personal information gathered about you remains confidential and will not be reported with your name attached.
How Can I Join a Colorectal Cancer Registry?
If you are interested in enrolling in an inherited colorectal cancer registry, talk to your cancer health care specialist. He or she will help you find a registry that is right for you.