The Hereditary Colorectal Cancer Registry

The Johns Hopkins Colorectal Cancer Registry was founded in 1973 and has been the foundation of hereditary and non-hereditary colorectal cancer research conducted at Johns Hopkins.  Many Johns Hopkins clinicians and researchers have utilized the information our registry provides for research on the causes of colon and rectal cancer.  The registry also provides services to families, community health professionals, and the general public, including educational materials and programs on hereditary colorectal cancer syndromes, cancer genetics, and current research.

Sign up for the Johns Hopkins Hereditary Colorectal Cancer Registry and participate in the following activities: 

  • Evaluation of family histories based on questionnaires and medical records
  • Genetic counseling
  • Recommendations regarding cancer management
  • Development and implementation of research studies
  • Provide information for patients and professionals about cancer genetics research
  • Referral of patients and service providers to community and hospital resources
  • Development of literature for use by public and private agencies and individual patients and their families

Sketch of DNA



To Sign up for the Registry Please Contact Us:

The Johns Hopkins Hospital  
 550 N. Broadway
 Suite 108
 Baltimore, MD

 Local: 410-955-3875
 Fax: 410-614-9544

About The Johns Hopkins Hereditary Colorectal Cancer Registry

Since our inception in 1973, the families in our registry have been the foundation of the familial colorectal cancer research conducted at Johns Hopkins. Many Johns Hopkins scientists have utilized our families for various research projects throughout the years. Our Johns Hopkins researchers have studied the members of the registry to find four of the genes that are responsible for the development of hereditary colorectal cancer.

Example of an hereditary condition affecting a family. Image Courtesy of the National Library of Medicine.

We also identified a gene that causes familial polyposis, a disease in which children develop hundreds of pre-cancerous colorectal polyps. By having the simple blood test developed from this discovery, many children do not have to undergo uncomfortable and expensive annual sigmoidoscopies if they are found not to have their family's genetic mutation.

Besides the research conducted using registry participants, the registry provides several services to the families, to community health care professionals, and to the general public. Each family enrolled in the registry is evaluated based on the family history they provide and the additional information collected through reviewing medical records. Our trained staff will discuss any findings with interested family members. We make recommendations to family physicians and genetic counselors on cancer management. The Registry also provides patients and professionals with information about cancer genetics and current research.

The Hereditary Colorectal Cancer Registry can provide literature developed by our staff to many public and private agencies and individual patients and their families. Many health care professionals use our Familial Adenomatous Polyposis (FAP) and Hereditary Nonpolyposis Colorectal Cancer (HNPCC) booklets for public and patient education. The coordinators of other university-based research projects often request the booklets for use as the educational components of their research activities.
Thank you for your interest in the activities of the Colorectal Cancer Registry. We appreciate your helping us learn about colorectal cancer occurring in families. If one or more people in your family have been diagnosed with colorectal cancer, please fill in the data below. We will send you a questionnaire so that you can register your family.
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