Hereditary cancer registry

The NSW & ACT Hereditary Cancer Registry (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.

While there are a number of hereditary related cancers, the conditions focused on include:

• Familial Adenomatous Polyposis (FAP)
• Lynch syndrome  (previously known as Hereditary Non-Polyposis Colorectal Cancer HNPCC)
• Peutz-Jeghers Syndrome (PJS)
• MUTYH (MYH) Associated Polyposis (MAP)
• Other polyposis syndromes (i.e. Juvenile Polyposis, Serrated Polyposis, Mixed Polyposis)

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. Download the HCR Screening Update Form (PDF).
• 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 (PDF) provided by your doctor or genetic counsellor or contact the HCR for more information.