Accessing our data
The Cancer Institute NSW manages a number of registries and data collections that provide the most up to date and accurate data about cancer control in NSW.
Data and information are provided on our website in published
reports or through the web based reporting module. Data and
information can also be provided for research or statistical
purposes as customised summary reports or as individual records as
long as the relevant legal and ethical requirements are met.
Requests for data may:
NSW Central Cancer Registry
The NSW Central Cancer Registry maintains records of people with
cancer and reports on the impact of cancer in the community... more
The Cancer Institute NSW manages BreastScreen NSW, a free breast
screening service for women aged 50 to 69 years...more >
NSW Pap Test Register
The NSW Pap Test Register is a secure and confidential database
of women's Pap tests and related follow-up test results... more
Information about the use of the Quitline service...
Hereditary Cancer Registry
The Hereditary Cancer Registry provides 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... more >
Australian Mesothelioma Registry
The Australian Mesotheliama Registry (AMR) contains information
about patients with mesothelioma, a cancer that develops in the
protective lining surrounding many of the body's internal organs...
Accessing data about yourself
Government Information Public Access Act GIPA... more
A lot of your questions may already be answered in Frequently Asked
Questions or Glossary
of common terms. If not please contact us.
Delayed release of the Australian Bureau of Statistics (ABS)
The Australian Bureau of
Statistics (ABS) is the National body responsible for
compiling, coding and publishing mortality data (including causes
of death) from source agencies - presently the State and Territory
Registries of Births, Deaths and Marriages (Registrars) and the National Coronial Information System
(NCIS) representing State and Territory Coroners.
The ABS releases potentially identifiable unit record data under
the Census and Statistics Act. Under this Act, the ABS can only
release potentially identifiable unit record data (including the
COD URF) to source agencies (i.e. Registrars and NCIS). Up until
the 2007 data release, the ABS supplied users with unit record
mortality files (including causes of death codes) with the
permission of the Registrars in each State and Territory. This
NSW Central Cancer Registry, which then matched deaths back to
cases on the Registry. However, this process, on review by the ABS,
was found to be not compliant with the requirements of the Act.
Consequently the ABS has undertaken a lengthy series of
negotiations with the source agencies to develop a process that
will enable users to continue to receive the Cause of Death unit
record file within the confines of the Act. The complexity of
Commonwealth and State/Territory legislation has made this process
lengthy and has therefore delayed provision of the 2008 and
subsequent data files. However a process has been developed and
agreement has now been reached.
The ABS is conducting a 'pilot' of the newly-negotiated process
with two user agencies in the first instance to test how the
negotiated process will work. Following this, a full national file,
including all State and Territory registrar data and coronial data
coded from the NCIS will be made available. The data available in
the first release will include 2009 (preliminary), 2008 (revised)
and 2007 (final) causes of death unit record data.
The Cancer Institute NSW will endeavour to finalise the 2009
cancer data as soon as possible after the death data are received
from the ABS. We apologise for any inconvenience this delay has
caused for the users of these data.
Update on the delayed release of cancer death data for
As a result of the large proportion of missing data (around 14%
of all cancer cases), we remain unable to release any cancer
mortality data at this time. We appreciate that this presents a
significant risk for researchers and other users of data, and are
placing the highest priority on developing a solution which
prevents this situation arising in future years.
Cancer incidence information
Cancer incidence-only data for 2009 will be made available in
the CHeReL Master Linkage Key and released to researchers. Data
will be supplied along with a caveat outlining the missing cases.
These are made up of Death Certificate Only (DCO) cases (around
1.5% of all cases), persons who have died inter-state, and
non-cancer deaths in NSW (around 12.5% of all cases).
If you are awaiting an extract of Central Cancer Registry data
for 2009, the CINSW Data Access and Research Liaison Service will
contact you in writing during March 2013 to advise you of options
and a time frame for the fulfilment of your request for data.
Last updated: 15/03/2013
Release of data from the NSW Central Cancer Registry
Cancer Institute NSW is currently building a new NSW Cancer
Registry, amalgamating the population-based NSW Central Cancer
Registry with clinical information such as stage and treatment data
currently collected within the Clinical Cancer Registries.
This enhancement will deliver a comprehensive and quality
information system to drive improvements across all aspects of
cancer control in NSW.
The new NSW Cancer Registries will be launched in June, enabling
us to analyse variation in outcomes for people diagnosed with
and/or treated for cancer in our community with new certainty and
After the launch we will undertake a series of quality
activities to ensure that data was migrated correctly. This project
is heavily reliant on our internal resources - particularly staff
who are intimately familiar with the data on all registries.
We appreciate your patience with any data request delays as a
result of this priority registry development. We will do our best
to promptly respond to all requests as soon as possible.
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