NSW & ACT Hereditary Cancer Registry

The Hereditary Cancer Registry (HCR) was established to provide information and support to people affected by hereditary cancer, their family members who may be at-risk, and their doctors in NSW and the ACT

While there are a number of hereditary related cancers, the conditions focussed on by the HCR include:

• Familial Adenomatous Polyposis - FAP
• Hereditary Non-Polyposis Colorectal Cancer – HNPCC
• Peutz-Jeghers Syndrome – PJS
• Juvenile Polyposis
• Other polyposis syndromes (i.e. Hyperplastic, Mixed Polyposis, MYH Polyposis)

What does the Hereditary Cancer Registry do?

• The HCR aims to assist people from families with a high risk of hereditary cancer to understand and manage their risk. It does this by:
• Building a complete picture of the condition in a family, assisting doctors to assess risks and plan screening and treatment.
• Developing knowledge about the incidence of hereditary cancer conditions in NSW and ACT
• Contributing to better information, services and support for patients and their families. For our latest newsletter, please click here.

Why should I register and how do I register?

• People from high-risk families are encouraged to register with the HCR to take advantage of our information, screening expertise and other services.
• Registration is voluntary, and personal information is held confidentially under the Health Information and Records Privacy Act.
• Registration can be completed using the registration form provided by your doctor or genetic counsellor or contact the HCR for more information.
• Download the HCR Registration Form (for health professionals only).
• The two graphs below show the total number of HCR registrants, and number of new registrations per year. Please click here to download a pdf file of the two graphs.

More Information

• HCR Services
• What is FAP?
• What is HNPCC?
• What is PJS?
• Genetic Counsellors
• Hereditary Cancer Registries in other states

For more information on hereditary cancer, please visit eviQ and click on the Cancer Genetics tab.

Contact the Hereditary Cancer Registry

To contact the HCR call Toll free on 1800 505 644 or email hcr@cancerinstitute.org.au or write to us as at:

NSW & ACT Hereditary Cancer Registry
c/o Cancer Institute NSW
PO Box 825
Alexandria NSW 1435