Registries for Hereditary Colon Cancer Patients

Registries for Hereditary Colon Cancer Patients

The greatest benefit to patients who join a registry is that they will have the opportunity to meet with a team of medical professionals who specialize in their syndrome. These medical professionals include gastroenterologists, surgeons, nurses, clinicians, registrars, and genetic counselors.

What is a Patient Registry?


A patient registry is a collection of patients and family members with hereditary colorectal cancer. Patient registries are hosted by hospitals and organized by medical teams who specialize in hereditary colorectal cancer.


Why join a Patient Registry?


The primary goal of a registry is to prevent death from cancer in patients born with a hereditary colon cancer syndrome. The registry team helps patients by:


  • offering education,


  • providing excellent medical care,


  • being a source of support and counseling, and


  • conducting clinically relevant research.



*** Each of these topics are discussed in more detail below. Click here to find a registry near you. ***





Patients are encouraged to educate themselves on their disease. A registry team educates its patients and their families by providing them information about their disease. This information includes:



  • who is at risk


  • what type of testing should be done and when


  • the different types of screening and treatments,


  • clear instructions,


  • surgical options current, and 


  • current clinical trials. 



Medical Care


In addition to providing quality health care to their patients, registry teams may also assist their patients by: 


  • scheduling appointments with the appropriate specialists,


  • sending out reminders of annual examinations, and


  • scheduling follow up appointments and tests.



Support and Counseling


A registry team supports its patients by: 


  • providing educational resources,


  • being a resource if they have questions regarding their disease


  • and providing patients with questions to ask physicians when looking for the best care at outside facilities.



Patients who join a registry often meet with genetic counselors to discuss in greater detail the benefits of genetic testing and how it can affect the whole family.



Research and Clinical Trials


The relationship between patients and registry teams is mutually beneficial. In return for providing quality services to patients, a registry benefits by:


  • collecting and organizing information about patients and families with hereditary colorectal cancer syndromes,


  • informing and potentially enrolling patients in ongoing clinical trials and other research studies, 


  • developing a better understanding of the causes, early detection, and treatment of hereditary colorectal cancer syndromes.



Click here to see a list of registries provided by the Collaborative Group of the Americas on Inherited Colorectal Cancer.



Information used in the development of this page was sourced from the following institutions: The Hereditary Gastrointestinal Cancer Registry at the Huntsman Cancer Institute , the Jagelman Registry and the Sanford R. Weiss, MD Center for Hereditary Colorectal Neoplasia at the Cleveland Clinic, the Johns Hopkins Hereditary Colorectal Cancer Registry, and the Inherited Colorectal Cancer and Familial Polyposis Registry at Washington University - St. Louis.