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Hereditary Cancer Registry

The Hereditary Cancer Registry (HCR) is a screening reminder service and was established in 1990 to provide information and support to people affected by hereditary cancer (particularly familial colorectal cancers), 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:

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.

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.  These services include:

  • A screening reminder service for you and your doctor/s to help you keep track of your various appointments.
  • Booklets and pamphlets about hereditary cancer conditions.
  • Information about hereditary cancer, its prevention, early detection, treatment and management.
  • Information about genetic services and tests.
  • Information and materials about specific hereditary bowel cancer conditions.
  • Linking separate branches of an extended family.
  • Assistance with contacting support groups (cancer/ ostomy / genetics).
  • Provide your hereditary information to interstate and overseas registers with your consent.
  • Referral to confidential telephone counselling.

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.

The graph below shows the total number of HCR registrants by hereditary cancer syndrome.

HCR Registrants by syndrome (Total 1,673)*


*As at December 2015. Excludes deceased.

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Contact the HCR

Ph (toll free): 1800 505 644

Office location

Australian Technology Park
Level 9, 8 Central Avenue

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Postal address:

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

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