NSW and ACT Hereditary Cancer Registry

The NSW & ACT Hereditary Cancer Registry (HCR) was established in 1990 and is an opt-in registery which provides information and support to people affected by hereditary cancer syndromes and their doctors in NSW and the ACT.

The HCR focuses on hereditary colorectal cancers syndromes and provides a screening reminder service. Find out more about the Hereditary Cancer Registry at What does the HCR do?

Data coverage

There are 2,271 registrants on the HCR (current as at June 2023).

The HCR includes data for people at risk of hereditary cancer syndromes, including:

• Familial adenomatous polyposis (FAP)
• Lynch syndrome (previously known as HNPCC)
• Peutz-Jeghers syndrome (PJS)
• MUTYH-associated polyposis (MAP)
• Juvenile Polyposis (JP)
• Serrated Polyposis Syndrome (SPS, formerly known as Hyperplastic Polyposis)
• Mixed polyposis
• PTEN hamartoma syndrome
• CHEK2-associated syndrome
• NTHL1-associated syndrome
• Other familial bowel cancer conditions where the underlying genetic cause is unknown

Find out more about hereditary cancers.

Data sources

Data are received from people who register with the HCR and their health professionals. Registration with the HCR is voluntary.

Electoral Roll data are provided to the Cancer Institute NSW by the NSW Electoral Commission for the purposes of ensuring the accuracy of records on people who participate in (or who are eligible to participate in) cancer screening programs.

Data are received from the NSW Cancer Registry for the purpose of verifying cancer diagnoses.

Data are provided to the Cancer Institute NSW by the Registry of Births, Deaths and Marriages for the purpose of ensuring that deceased people are not contacted regarding cancer screening programs.

Data availability

Most recent year: 2023 (up to date)
Next release: The HCR is updated on an ongoing basis
Historical series:

• FAP: 1990 – 2023
• Lynch syndrome: 1992 – 2023

To request data, see our data available on request page.

Data elements

The HCR includes:

• Information about the registrant, including demographic and contact details
• Details about the hereditary cancer syndrome, genetic testing and surveillance plans
• Information about the registering clinician
• Information about the family pedigree.

Data quality

Data quality processes include:

• Checks of completeness of data items
• Investigation of incomplete reporting
• Validation of data entry
• Family link checks and cross-checks of data items
• Periodic audits of data accuracy
• Reconciliation of information from multiple sources
• Collaboration with family cancer clinics, treating doctors and other cancer registries
• Verification using the NSW Electoral Roll, NSW Cancer Registry, and Registry of Births, Deaths and Marriages data.

Data custodian

Director, Cancer Services and Information
Cancer Institute NSW
Locked Bag 2030
ST LEONARDS, NSW 1590

All questions relating to this dataset should be directed to:

Email: cinsw-hcr@health.nsw.gov.au
Phone: 1800 505 644
Fax: 02 8374 3617