Hereditary cancer registry
Learn about the NSW & ACT Hereditary Cancer Registry (HCR) designed to assist people from families with a high risk of hereditary cancer to understand and manage their risk.
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.