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Hereditary Colorectal Cancer Registry

Phone: 410-955-3875
E-mail: hccregistry@jhmi.edu

The Johns Hopkins Hereditary Colorectal Cancer Registry (JHHCCR) is a resource for patients, families, health professionals, and researchers. Medical information about families with a history of colorectal cancer are stored in secured registry files.

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. These important advancements could not have been made without the enrollment and support of our registry families.

If you are interested in joining the HCCR please request an enrollment packet.

For more information please contact Miriam Tillery, Registry Coordinator at:

Local: 410-955-3875
Toll-Free: 888-77-COLON (888-772-6566)
E-mail: hccregistry@jhmi.edu

What does the registry do?

  • Provides cancer screening recommendations to patients, family members and doctors.
  • Gives families and health professionals the most up-to-date information, provided in an annual newsletter, on genetic causes of colorectal cancer.
  • Refers patients to genetic counselors in their area.
  • Collaborates with researchers at Johns Hopkins and around the world to learn more about the causes, early detection, and treatment of hereditary colorectal cancer.
  • Enrolls patients and family members in research studies.
  • Develops and provides educational materials for patients, families and health professionals.

What is required of me in order to join the registry?

To join the registry, please fill out a family medical history questionnaire and Johns Hopkins consent form. With your permission, the Registry Coordinator sometimes contacts family members and health care providers to obtain medical records related to your family’s history of cancer.

Is my privacy protected?

All information you provide is kept completely confidential and protected by a Certificate of Confidentiality, issued by the federal government. This certificate prohibits access to your personal health information, known as PHI, by anyone who is not JHHCCR personnel or a Johns Hopkins investigator. Some of your information may be used for research purposes, but your name and PHI will never be used without your permission.

For Clinical appointments with the Cancer Risk Assessment Program (Genetic Counseling),
please call: (410)502-7082.

 

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