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NSW and ACT Hereditary Cancer Registry

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

The HCR also provides these services to family members who may be at risk, and their doctors. Find out more about the Hereditary Cancer Registry at What does the HCR do?

Data coverage

As at March 2020, there were 2,076 registrants on the HCR.

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 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: 2019 (up to date)
Next release: The HCR is updated on an ongoing basis
Historical series:

  • FAP: 1990  2019
  • Lynch syndrome: 1992  2019

To request data, see our cancer data and statistics 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 and Registry of Births, Deaths and Marriages data.

Data custodian

Director, Cancer Services and Information
Cancer Institute NSW
PO Box 41
ALEXANDRIA NSW 1435

All questions relating to this dataset should be directed to:

Email: cinsw-HCR@health.nsw.gov.au
Phone: 02 8374 3698 or 1800 505 644
Fax: 02 8374 3644

Tags:

Cancer data