This page lists the data collections by different agencies grouped by category and purpose.
(Select an option from 'Category' and/or 'Purpose' and press 'Apply' to filter this list.)

Organisation Data Collection Description Category Purpose Reference

ABS

2011-13 Australian Health Survey

The AHS collected a range of health-related information from a geographically representative sample of Australians, including:
- health status and long-term health conditions
- health risk factors (such as alcohol consumption, tobacco smoking and Body Mass Index) height and weight, waist circumference, blood pressure)
- socioeconomic conditions
- new information on nutrition and physical activity, pedometer use through the National Nutrition and Physical Activity Survey
- the first national biomedical information collection (height and weight, waist circumference, blood pressure), through the National Health Measures Survey

Survey Health Service Management http://www.abs.gov.au/australianhealthsurvey

ABS

Causes of Death Data Collection

This collection is a significant source of information on Cause of Death and outcome of disease, risk behaviour and injury. It is used in a variety of ways, from identifying the leading causes of death of Australians to deriving survival rates for certain cancers, when linked to the cancer registries data.

Federal Government Health Service Management http://www.abs.gov.au/ausstats/abs@.nsf/mf/3303.0

AIHW

National Hospital Morbidity Database

Maintained by AIHW with the collaboration of the states/territories who provide their respective hospital data to AIHW for collation.

The AIHW collates and validates data supplied by state and territory health authorities to assemble six databases which form the foundation for the AIHW's statistical reporting on hospitals.

National hospital data are specified in the National Minimum Data Sets to ensure uniform information relating to hospitals.

The National Hospital Morbidity Database (NHMD) is a compilation of episode-level records from admitted patient morbidity data collections in Australian hospitals. It includes demographic, administrative and length of stay data for each hospital separation. Clinical information such as diagnoses, procedures undergone and external causes of injury and poisoning are also recorded.

Federal Government Health Service Management http://www.aihw.gov.au/hospitals-data/national-hospital-morbidity-database/

AIHW

Australian Cancer Database

Maintained by AIHW with the collaboration of the states/territories who provide their respective Cancer Registries data to AIHW for collation. Reporting of most cancers is mandatory in all Australian states/territories through their legislation. State/territory cancer registries receive information on cancer diagnoses and mortality from hospitals, pathology laboratories, radiotherapy centres and registries of births, deaths and marriages. Individual details such as name and address are collected to ensure that each new cancer is only counted once in the statistics. The Cancer Registries in each state/territory provides the data to the AIHW for collation into the national database of cancer incidence.

Health Research, Health Service Management http://www.aihw.gov.au/australian-cancer-database/

AIHW

National Drug Strategy Household Surveys

Conducted by AIHW. DoH funds this collection every 3 years as part of the National Drug Strategy.
Provides cross-sectional data on alcohol and other drug use in Australia, Including:
- the level, patterns and trends in the use of tobacco, alcohol and other substances
- community awareness and knowledge of licit and illicit drug use
- community support for various drug-related policies
- groups with a high risk for drug abuse
Stakeholder consultation (including a technical advisory group of experts) is conducted each cycle to inform the survey.

Survey Health Service Management http://www.aihw.gov.au/alcohol-and-other-drugs/ndshs/

University of Newcastle and University of Queensland

Australian Longitudinal Study on Women's Health

ALSWH is a longitudinal population based survey examining the health of over 58,000 Australian women. ALSWH explores factors that influence health among women who are broadly representative of the entire Australian population and is the largest project of its kind ever conducted n Australia. The project takes a comprehensive view of all aspects of health (not just reproductive and sexual health) throughout women's lifespan and has an international reputation for its multidisciplinary methodology.
The project assesses:

- Physical and emotional health (including well-being, major diagnoses, symptoms)
- Use of health services (GP, specialist and other visits, access, satisfaction)
- Health behaviours and risk factors (diet, exercise, smoking, alcohol, other drugs)
- Time use (including paid and unpaid work, family roles and leisure)
- Socio-demographic factors (location, education, employment, family composition)
- Life stages and key events (such as childbirth, divorce, widowhood)

Research Health Research http://www.alswh.org.au/

University of Melbourne

Australian Longitudinal Study on Male Health (Ten To Men)

Ten To Men is the first national longitudinal study in Australia which addresses information gaps on male health (including health behaviours and risk factors) and wellbeing to inform health programs and policies targeted males. The Study is an initiative of the National Male Health Policy.
The study recruits 58,000 a large number of Australian males aged 10 toto 55 years, oversampling younger males and males from rural and regional areas. Wave 1 data collection started in mid-2013, and it is anticipated that follow-up waves will be conducted with follow-up waves every 3 years.

Research Health Research http://www.tentomen.org.au/

The Sax Institute

45 and Up Study

This is a general population cohort study into healthy ageing. It collects cohort data (including health behaviours and associated risk factors) on about 250,000 people aged 45 and over in NSW and links data collected with health and health service use datasets.
The Study has in-principle permission for data linkage at the Centre for Health Record Linkage (CHeReL) from several organisations, including NSW Health, DoH and Medicare Australia (MBS and PBS datasets), the NSW Cancer Institute, AIHW, ABS and the Department of Veteransメ Affairs.

Research Health Research www.saxinstitute.org.au

NSW MoH

NSW Mental Health Ambulatory Data Collection

The NSW Mental Health Ambulatory Data Collection is dedicated to the assessment, treatment, rehabilitation or care of non-admitted patients. It may include mental health day programs, psychiatric outpatients and outreach services (e.g. home visits). The data records 'contacts' (as opposed to 'episodes of care') by clinicians to a patient.

State Government Health Research, Health Service Management, Patient Care http://www.cherel.org.au/data-dictionaries

NSW MoH

NSW Admitted Patient Data Collection (APDC)

This collection records all admitted patient services provided by New South Wales Public Hospitals, Public Psychiatric Hospitals, Public Multi-Purpose Serivces, Private Hospitals, and Private Day Procedures Centres.

State Government Health Service Management http://www.cherel.org.au/data-dictionaries

NSW MoH

NSW Emergency Department Data Collection (EDDC)

The Emergency Department collection provides information about patient presentations to the emergency departments of public hospitals in New South Wales

State Government Health Service Management http://www.cherel.org.au/data-dictionaries

NSW MoH

NSW Perinatal Data Collection (PDC)

The NSW Perinatal Data Collection (formerly known as the Midwives Data Collection) is a population-based surveillance system covering all births in NSW public and private hospitals, as well as homebirths.

State Government Health Service Management http://www.cherel.org.au/data-dictionaries

NSW MoH

NSW Central Cancer Registry (CCR)

The NSW Central Cancer Registry maintains records of people with cancer and reports on the impact of cancer in the community.

Registry Health Research, Health Service Management http://www.cherel.org.au/data-dictionaries

NSW MoH

NSW Mortality Data

Two datasets contain mortality information for deaths occuring in NSW: the Registry of Births, Deaths and Marriages (RBDM) death registrations and the Australian Coordinating Registry (ACR) Cause of Death Unit Record File (COD URF), which also includes Australian Bureau of Statistics (ABS) death registration data prior to 2006.

State Government Health Service Management http://www.cherel.org.au/data-dictionaries

NSW MoH

NSW Notifiable Conditions Information Management System (NCIMS)

The NSW NCIMS is a register of diagnoses of certain infectious diseases and adverse events following immunisation, notified to the NSW Department of Health by laboratories, hospitals, medical practitioners, schools, and child care centres.

Registry Health Service Management http://www.cherel.org.au/data-dictionaries

NSW MoH

NSW Perinatal Death Review Database

The Perinatal Death Review Database includes information on about 800 perinatal deaths per year. The information is obtained from confidential reviews carried out by the NSW Maternal and Perinatal Committee, which is a quality assurance committee appointed by the Minister for Health to review perinatal morbidity and mortality in NSW.

State Government Health Service Management http://www.cherel.org.au/data-dictionaries

NSW MoH

NSW Birth Registration Data Collection

The NSW Registry of Births, Deaths and Marriages (RBDM) keeps a permanent record of all registered births.

Registry Health Service Management http://www.cherel.org.au/data-dictionaries

NSW Cancer Institute

NSW Pap Test Register

The NSW Pap Test Register collects data on women who have a pap test in NSW and contains details of the woman undergoing the test and test results including Pap tests, cervical histology tests or HPV DNA tests.

Registry Health Research, Health Service Management, Patient Care http://www.cherel.org.au/data-dictionaries

NSW Ambulance Services

NSW Ambulance Data Collections

NSW Ambulance data collections contain operational information from the Computer Aided Dispatch (CAD) system, and also data documented by clinicians in the paper-based Patient Health Care Record (PHCR) and electronic medical record (eMR). Clinical information includes patient vital signs. NSW Ambulance datasets capture information for emergency and urgent episodes of care for NSW Ambulance patients who: were transported to a hospital; were left at a scene following clinician assessment; or, who died at the scene. NSW Ambulance clinicians respond to more than one million emergency and non-emergency cases every year.

State Government Health Service Management http://www.cherel.org.au/data-dictionaries

ABS

ABS Perinatal Deaths

This dataset contains information on perinatal and neonatal deaths in NSW, registered by the Registry of Births, Deaths and Marriages and coded by the Australian Bureau of Statistics.

Federal Government Health Service Management http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/3303.0Chapter392011

ACT Health

ACT Admitted Patient Care

The ACT Admitted Patient Care (APC) data records all inpatient separations (discharges, transfers and deaths) from all public and private hospitals in ACT. Currently, data from Canberra Hospital (Public) and Calvary Hospital (Public) are included in the Master Linkage Key.

State Government Health Service Management http://www.cherel.org.au/data-dictionaries

ACT Health

ACT Cancer Registry

The ACT Cancer Registry maintains records of people with cancer in the ACT and reports on the impact of cancer in the community.

Registry Health Research, Health Service Management http://www.cherel.org.au/data-dictionaries

ACT Health

ACT Emergency Department Data Collection

The ACT Emergency Department Data Collection provides information about patient presentations to the emergency departments of public hospitals in the ACT.

State Government Health Service Management http://www.cherel.org.au/data-dictionaries

ACT Health

ACT Perinatal Data Collection

The ACT Perinatal Data Collection (formerly known as the Midwives Data Collection) is a population-based surveillance system covering all births in ACT public and private hospitals, as well as homebirths. Currently, data from Canberra Hospital is included in the Master Linkage Key.

State Government Health Service Management http://www.cherel.org.au/data-dictionaries

ACT Health

ACT Notifiable Diseases Management System

The ACT Admitted Patient Care (APC) data records all inpatient separations (discharges, transfers and deaths) from all public and private hospitals in ACT. Currently, data from Canberra Hospital (Public) and Calvary Hospital (Public) are included in the Master Linkage Key.

State Government Health Service Management http://www.cherel.org.au/data-dictionaries

AcT Health

ACT Birth Registration Data

The ACT Registrar of Births, Deaths and Marriages (ACT RBDM) keep a permanent record of all registered births.

State Government Health Service Management http://www.cherel.org.au/data-dictionaries

ACT Health

ACT Mortality Data

Two datasets contain mortality information for deaths occurring in the ACT: The Registry of Births, Deaths and Marriages (ACT RBDM) death registrations and Australian Coordinating Registry (ACR) Cause of Death Unit Record File (COD URF). The ACR COD URF is available from 2006 onwards.

State Government Health Service Management http://www.cherel.org.au/data-dictionaries

The Australian Government, as represented by the Department of Education and Training

The Australian Early Development Census (AEDC)

The Australian Early Development Census (AEDC) is a population based measure of childrenメs development in their first year of full-time school. The AEDC datasets provide widespread coverage of this group - national participation has been in excess of 96 per cent in each Census undertaken, in 2009, 2012 and 2015.

Survey Health Service Management http://www.aedc.gov.au/researchers/about-the-aedc-data

Registrar of Births, Deaths Marriages

ABS

RBDM Death Registrations and NSW Mortality Data

Two datasets contain mortality information: Registry of Births, Deaths and Marriages (RBDM) death registration data and the Australian Bureau of Statistics (ABS) death registration data. Only the ABS mortality data includes ABS coded cause of death variables.

State Government Health Service Management http://www.cherel.org.au/data-dictionaries http://meteor.aihw.gov.au/content/index.phtml/itemId/396126

Office of Births, Deaths and Marriages of the Northern Territory Department

NT Births Registry

The Register includes all children born and subsequently registered in the Northern Territory. Deaths in utero that occur after 20 weeks gestation or at greater than 400 grams are recorded in the BDM Births Register. BDM do not have a separate stillbirths register as they do in South Australia. The stillbirth is not recorded in the Deaths Register. Where there is sign of life at birth, but the neonate subsequently dies, the birth is recorded in the Births Register and the death is recorded in the Deaths Register.

Registry Health Service Management https://www.santdatalink.org.au/available_datasets

Office of Births, Deaths and Marriages of the Northern Territory Department

NT Deaths Registry

The Register includes any person who has died in the Northern Territory. Deaths in utero that occur after 20 weeks gestation or at greater than 400 grams are recorded in the BDM Births Register. BDM do not have a separate stillbirths register as they do in South Australia. The stillbirth is not recorded in the Deaths Register. Where there is sign of life at birth, but the neonate subsequently dies, the birth is recorded in the Births Register and the death is recorded in the Deaths Register.

Registry Health Service Management https://www.santdatalink.org.au/available_datasets

NT Department of Health

NT Inpatient Activity

Northern Territory Government public hospitals admitted patient data collection.
Includes: Royal Darwin Hospital, Katherine District Hospital, Tenant Creek Hospital, Gove District Hospital, Alice Springs Hospital.
Excludes: Darwin Private Hospital; data from Aboriginal Community Controlled Health Centres; data from NT Government remote health clinics.

State Government Health Service Management https://www.santdatalink.org.au/available_datasets

NT Department of Health

NT Perinatal Trends

Population-based census of all births that occurred in the NT, including births in all public hospitals, the Northern Territoryメs only private hospital, planned home births, births in community health centres and other non-hospital births. All live births and stillbirths of at least 20 weeks gestation or with a birthweight of at least 400 grams are included.

The data in this collection is entered by midwives. The collection contains information about population characteristics of the mother, antenatal care, maternal health, the pregnancy, labour and childbirth and perinatal health.

State Government Health Service Management https://www.santdatalink.org.au/available_datasets

Centre for Disease Control, NT Health

NT Immunisation Register

The Northern Territory Immunisation Register (NTIR) is a database which records the immunisation history of both children and adults who have received vaccines in the Northern Territory. The Register is maintained by the Northern Territory Department of Healthメs ムCentre for Disease Controlメ as part of their Immunisation Program.

Registry Health Research, Health Service Management http://health.nt.gov.au/Centre_for_Disease_Control/Immunisation/NT_Immunisation_Register/index.aspx

NT Department of Health

NT Cancer Register

The Northern Territory Cancer Register is a register of all NT residents diagnosed with cancer, which is maintained by the Northern Territory Cancer Registry, a population based cancer registry administered by the NT Department of Health. The Northern Territory Cancer Registry collects a minimum dataset for each newly diagnosed case of reportable cancer, and updates the case record with further cancer-related information, as required, for the rest of the personメs life.

Registry Health Research, Health Service Management http://digitallibrary.health.nt.gov.au/dspace/bitstream/10137/61/1/cancer_register_data_collection.pdf

NT Department of Health

NT Primary Health Care Collection

The ムPrimary Health Care Collectionメ refers to episode level data recorded during a patientメs attendance at remote health clinics under the auspice of Northern Territory Government Department of Health and which have the Primary Care Information System (PCIS) as the source information system. 47 remote health clinics are covered.

Aboriginal Community Controlled Health Centres are not covered within this collection.

State Government Health Service Management PHRN - http://www.phrn.org.au/for-researchers/data-collections-available/northern-territory/

NT Department of Health

NT Emergency Department Activity Collection

The Emergency Department data collection refers to data recorded during a patientメs presentation to the Emergency Department of any of the five public hospitals in the Northern Territory.
Royal Darwin Hospital
Alice Springs Hospital
Gove District Hospital
Katherine District Hospital
Tennant Creek Hospital

State Government Health Service Management http://www.phrn.org.au/for-researchers/data-collections-available/northern-territory/

Queensland Health - Health Statistics Unit

Registrar General - Birth registration

The Register includes all births that occur in QLD including stillbirths (The term 'stillborn child' is defined as a child who has been carried in the womb for 20 weeks or more, or weighs 400 grams or more). In addition to the administrative Birth Registration information (required under the Regulations) additional information is collected for stillbirths on the Medical Certificate of Cause of Perinatal Death. This information is gathered for statistical purposes and forwarded to the ABS for coding and collation at a national level. Although stillbirths are registered as a birth, for reporting purposes these are accounted for in perinatal death statistics published in Perinatal Deaths, Australia and previously, in Causes of Death, Australia.

Registry Health Service Management http://www.phrn.org.au/for-researchers/data-collections-available/queensland/

Queensland Health

Perinatal Data Collection

The Qld Perinatal Data Collection is managed by Qld Health. It is an administrative data collection which records all births in Qld. Information in the PDC is collected under the Public Health Act 2005, whereby the perinatal data is required to be provided to Qld Health as per Part 1, Chapter 6.

The information collected in the PDC is about pregnancy care, services and outcomes. This includes demographic, medical and obstetric information about the mother; and information on the labour, delivery and condition of the infant.

The scope of the PDC is all births in Qld public and private hospitals and home births. It encompasses all live births, and stillbirths of at least 20 weeks gestation and/or 400 grams in weight. Information relating to neonatal morbidity is collected up until the baby is discharged from the birth admission or up until the baby reaches 28 days of age.

State Government Health Service Management https://www.health.qld.gov.au/hsu/collections/pdc.asp

Queensland Health

Queensland Emergency Department Information System (EDIS)

The Queensland Emergency Department Information System (EDIS) is an administrative data collection that contains demographic, administrative and clinical data detailing presentations to Emergency Departments (ED) at most public hospitals in Queensland. The EDIS is based on the "Non-admitted Patient Emergency Department Care? National Minimum Data Set (NMDS).

The EDIS is administered by the Queensland Department of Health. Information in the EDIS is required under the National Health Care and National Health Information Agreements (NHCA & NHIA).

The scope of this data collection currently covers the Emergency Departments of most Qld public hospitals. The purpose of the collection is to enable comparisons of performance with respect to access to services, quality clinical outcomes and patient management. The collection aims to show patterns in presentations to assist in the planning of services and improvement of care and outcomes for the Queensland public.

State Government Health Service Management https://data.qld.gov.au/dataset/emergency-departments

Queensland Health

Queensland Hospital Admitted Patient Data Collection

The Queensland Hospital Admitted Patient Data Collection (QHAPDC) covers all admitted patient separations from recognised public hospitals and licensed private hospitals and day surgery units. A separation can be a formal separation (including discharge, transfer or death) or a statistical separation (episode type changes).

QHAPDC contains data on all patients separated (an inclusive term meaning discharged, died, transferred or statistically separated) from any hospital permitted to admit patients, including public psychiatric hospitals. In Queensland, ICD-10-AM codes have been used to define principal and other diagnoses since 1 July 1999. Prior to this, diagnoses were coded using ICD-9-CM.

State Government Health Service Management https://www.health.qld.gov.au/hsu/collections/qhapdc.asp

Queensland Health - Health Statistics Unit

Registrar General - Deaths

The Register includes all deaths that occur in QLD. For reporting purposes, statistics about stillbirths are published by the ABS in Perinatal Deaths, Australia.

Data is obtained from the Death Registration application form provided by funeral director and completed by spouse, partner or relative of deceased and Medical Certificate of Cause of Death and if a perinatal death, a Perinatal Supplement (to cause of Death Certificate), supplied by the certified medical practitioner certifying the death or supplied as a result of a coronial investigation.

Registry Health Service Management https://www.health.qld.gov.au/hsu/link/datasets.asp

SA Registrar of Births, Deaths and Marriages

SA Births Registry

The Register includes all children born and subsequently registered in South Australia including stillbirths. In addition to the administrative Birth Registration information additional information is collected for stillbirths on the Medical Certificate of Cause of Perinatal Death. Although stillbirths are registered as a birth, for reporting purposes these are accounted for in the perinatal death statistics.

The Birth Registration Statement contains the details prescribed by Regulation, including, but not limited to: details of the baby such as name, sex, birth weight and whether a multiple birth; date and place of birth; and details of the parents and previous children.

Registry Health Service Management https://www.santdatalink.org.au/available_datasets

SA Health

Perinatal Statistics Collection

The information collected in the SA Perinatal Statistics Collection is about pregnancy care, services and outcomes. This includes demographic, medical and obstetric information about the mother; and information on the labour, delivery and condition of the infant.

The scope of the SA Perinatal Statistics Collection is all births in SA public and private hospitals, and home births. This includes women whose usual place of residence is outside SA, who gave birth in SA. It encompasses all live births and stillbirths of at least 20 weeks gestation or at least 400 grams birth weight. (Since 2006 all live births have been included, regardless of gestational age.) Births that occurred outside SA to women usually resident in SA are not included in the collection.

State Government Health Service Management https://www.santdatalink.org.au/files/researchers/DQS_Perinatal_Formatted_v01_30_FINAL.pdf

SA Health

Emergency Department Data Collection

The scope of this data collection currently covers the Emergency Departments of all the major metropolitan public hospitals. The purpose of the collection is to enable comparisons of performance in respect to access to services, quality clinical outcomes and patient management. The collection aims to show patterns in presentations to assist in the planning of services and improvement of care and outcomes for the South Australian public.

State Government Health Service Management https://www.santdatalink.org.au/files/researchers/DQS_EDDC_May2010_V1.00.pdf

SA Health

Inpatient Hospital Separations

The Inpatient Hospital Separations dataset includes all admitted patient separations (discharges, transfers and deaths) from every South Australian: Public Acute Hospital; Public Psychiatric Hospital; Private Acute Hospital (licensed by SA Health); Private Psychiatric Hospital (licensed by SA Health); and Private Day Surgeries (licensed by Commonwealth). Note that Private separations are currently unavailable for data linkage.

Data are recorded by hospital staff in the course of hospital business. Hospitals submit data to the collection in a variety of formats (paper, disc, email) and it is processed into the collection by the SA Health Information Assembly unit. Records are updated at the time of separation, e.g. discharge, transfer or death.

State Government Health Service Management https://www.santdatalink.org.au/available_datasets

SA Dental Service

South Australia Dental Service

The South Australian Dental Service data collection contains administrative and clinical electronic dental records and includes identification, demographic and medico-legal information. It is a legal requirement to hold a register of administrative and clinical information for monitoring, auditing and investigational purposes. Dental Practice Act 2001 and the Healthcare Act 2008

Records include administrative information (i.e. registration/consent; co-payment fees collection; waiting list or recall details; related documents and a complete log of communication and actions taken) and clinical datasets (i.e. dental procedures and assessments; dental service codes; dates; service providers; clinical notes of relevance and a medical history summary).

State Government Health Service Management https://www.santdatalink.org.au/files/researchers/DQS_SADS_201012_v1.00.pdf

State Health Departments

Child Health Record - (This is maintained for every state)

Child Health Record The Child Health Record, commonly known as "the blue book" is used to record important information about a child's health between birth and six years. The Child Health Record documents key developmental milestones at: 1-4 weeks 6-8 weeks 6-9 months 18-24 months 3 years 4 years. Routine health checks documented within the Child Health Record are usually performed by a medical practitioner (paediatrician; general practitioner) or Child and Family Health nurse. The Child Health Record is also used to document other important information such as neonatal hearing screening results, immunisation history, and when specialist health professionals such as a speech pathologist or physiotherapist are involved in the medical care of a child.

State Government Health Research, Health Service Management, Patient Care PHRN

SA Health

The South Australian Cancer Registry

The SACR provides population-based statistics about cancer incidence, mortality, and case fatality (survival) for the residents of South Australia. The SACR collects a minimum data set for each cancer case, including such elements as place of residence, sex, date of birth, date of diagnosis, cancer site and morphology, means of diagnosis, whether there were multiple primary sites of cancer, race, country of birth, and date, place and cause of death, where applicable. Primary sources of information include pathology laboratories, hospitals, radiotherapy departments, the Registrar of Births, Deaths and Marriages (BDM) and other supplementary sources such as clinicians. These notifications are mandated by the SA Cancer Regulations. The information is refined through contact with the primary health-care sector and with other cancer registries, resulting in near 100% ascertainment.

Registry Health Research, Health Service Management https://data.sa.gov.au/data/dataset/sa-cancer-registry

SA Registrar of Births, Deaths and Marriages

SA Deaths Registry

The Register includes any person who has died in the South Australia. Deaths in utero that occur after 20 weeks gestation or at greater than 400 grams are recorded in the Births Register. Stillbirths and fetal deaths are not recorded in the Deaths Register. Where there is sign of life at birth, but the neonate subsequently dies, the birth is recorded in the Births Register and the death is recorded in the Deaths Register. The Death Registration Statements contains the details prescribed by Regulation, including but not limited to: demographic details such as name at birth, Aboriginal/Torres Strait Islander status, sex, occupation, date and place of birth; age at death; date of death; place of death; cause of death; marital status; details of parents; details of children; Coroner details; and funeral director details.

Registry Health Research, Health Service Management https://www.santdatalink.org.au/available_datasets

Menzies Insitute for Medical Research

Tasmanian Births Register

The Register includes all children born and subsequently registered in the state of Tasmania. Stillbirths, or deaths in utero that occur after 20 weeks gestation, or with a body mass of at least 400 grams at birth, are recorded in the Births Register.

Registry Health Service Management http://www.menzies.utas.edu.au/research/research-centres/data-linkage-unit/datasets-available

DHHS Tasmania

Tasmanian Perinatal Data Collection

The information in this collection is specific to pregnancy care, services and outcomes. This includes demographic, medical and obstetric information about the mother; and information on the labour, delivery and condition of the infant. The majority of data items collected, and definitions used, consistent with those in the National Minimum Data Set (NMDS) for perinatal data collections, which have been developed by the Australian Institute of Health and Welfare in consultation with State and Territory health authorities and the Australian Bureau of Statistics. The scope of the perinatal collection is all births in Tasmanian public and private hospitals, birthing centres and home births. It encompasses all live births and stillbirths of at least 20 weeks gestation or weighing at least 400 grams at birth.

State Government Health Research, Health Service Management http://www.menzies.utas.edu.au/research/research-centres/data-linkage-unit/datasets-available

DHHS Tasmania

Tasmanian Public Hospital Emergency Department Presentations

Emergency Department (ED) presentations at public hospitals in Tasmania are captured in an administrative data collection and contain demographic, administrative and clinical data specific to each presentation. Each person presenting to an ED is assigned a unique 9-digit patient identifier.

State Government Health Service Management http://www.menzies.utas.edu.au/research/research-centres/data-linkage-unit/datasets-available

DHHS Tasmania

Public Hospital Admitted Patient Collection

The Tasmanian public hospital admitted patient data collection contains morbidity data on admitted patients from the four major public in Tasmania being the Royal Hobart, Launceston General, Mersey Community and North-West Regional Hospitals.

State Government Health Service Management http://www.menzies.utas.edu.au/research/research-centres/data-linkage-unit/datasets-available

Federal Department of Education

The Australian Early Development Index (AEDI)

The Australian Early Development Index (AEDI) is a full population census of children's health and development in their first year of formal full-time schooling. It provides a comprehensive map of early developmental outcomes across Australia.

Survey Health Research PHRN

Menzies Insitute for Medical Research

Tasmanian Cancer Registry

The TCR provides population-based statistics about cancer incidence and mortality for the residents of Tasmania. The TCR collects a minimum data set for each cancer case, including such elements as place of residence, sex, date of birth, date of diagnosis, cancer topography and morphology, means of diagnosis, whether there were multiple primary sites of cancer, race, country of birth, and date, place and cause of death, where applicable.

Registry Health Research, Health Service Management http://www.menzies.utas.edu.au/research/research-centres/tasmanian-cancer-registry

Menzies Insitute for Medical Research

Tasmanian Deaths Register

The Register of Deaths includes any person who died in Tasmania; stillbirths and fetal deaths are not recorded in the Deaths Register.

Registry Health Service Management http://www.menzies.utas.edu.au/research/research-centres/data-linkage-unit/datasets-available

Department of Health, Victoria

Emergency Minimum Dataset

The Victorian Emergency Minimum Dataset (VEMD) contains de-identified demographic, administrative and clinical data detailing all presentations to all public hospital Emergency Departments (ED) in Victoria.

Collection processes are based on standard definitions that comply with the Emergency Department Care National Minimum Data Set (NMDS).

The purpose of the collection is to enable comparisons of ED operation and management, particularly in respect to access to services. The collection also aims to assist health service planning and coordination, policy assessment and formulation and epidemiological research.

State Government Health Service Management https://www2.health.vic.gov.au/hospitals-and-health-services/data-reporting/health-data-standards-systems/data-collections/vemd

Department of Health, Victoria

Admitted Episodes Dataset

The Victorian Admitted Episodes Dataset (VAED) comprises demographic, clinical and administrative details for every admitted episode of care occurring in Victorian public and private hospitals including rehabilitation centres, extended care facilities and day procedure centres.

Collection processes are based on standard definitions that comply with the Admitted Patient National Minimum Data Set (NMDS).

The purpose of the collection is to provide information to assist in health services planning, policy formulation, casemix funding and epidemiological research.

Registry Health Service Management https://www2.health.vic.gov.au/hospitals-and-health-services/data-reporting/health-data-standards-systems/data-collections/vaed

Department of Health, Victoria

Victorian Cancer Registry (VCR)

The Victorian Cancer Registry (VCR) captures information on all malignant neoplasms and insitu carcinoma of breast and cervix and insitu melanoma diagnosed in Victoria. Basal cell carcinomas (BCC) and squamous cell carcinomas (SCC) of the skin are not registered (except for SCC of genital and perianal skin and the vermillion border of lip). The VCR has been a population-based registry since 1982. The Cancer Act 1958 (Vic) mandates the reporting of cancer to The Council (Sections 60 to 61). Cancer Council Victoria (The Council) has established and maintains the Victorian Cancer Registry (VCR) to fulfil its statutory obligations to capture cancer data. All Victorian hospitals (public and private), pathology services (public and private) and prescribed registers, are required to submit details of patients admitted and treated for cancer to the VCR The purpose of the VCR is to support monitoring cancer incidence, mortality and survival in Victorian residents. In addition, the data is made available to support health service planning and evaluation and cancer research. VCR collects a minimum data set for each cancer case, including place of residence, sex, date of birth, date of diagnosis, cancer site and morphology, best basis of diagnosis, country of birth, and date, place and cause of death, where applicable.

Registry Health Research, Health Service Management http://www.cancervic.org.au/research/registry-statistics/vcr

Department of Health, Victoria

Elective Surgery Information System (ESIS)

The Elective Surgery Information System (ESIS) collects episode-level elective surgery waiting list information from major Victorian metropolitan and rural public hospitals.

State Government Health Service Management https://www2.health.vic.gov.au/hospitals-and-health-services/data-reporting/health-data-standards-systems/data-collections/esis

Department of Health, Victoria

Victorian Death Index

The Register includes all deaths that occur in Victoria. The following deaths are registered in Victoria:
deaths in the state of Victoria (all)
deaths where a court directs registration of the death in Victoria (all)
deaths on aircraft/ships en route to Victoria (may be refused registration if registrable under other laws)
perinatal deaths (ie where the child has breathed without assistance prior to death)
deaths overseas where the deceased either was a Victorian resident and/or owned property in Victoria (voluntary)
The following deaths are NOT registered in Victoria:
stillbirths (ie where the child did not breathe without assistance prior to death)
deaths in Victorians which occur elsewhere in Australia
The Death Registration Statements contains the details prescribed by Regulation, including but not limited to: demographic details such as name at birth, Aboriginal/Torres Strait Islander status, sex, occupation, date and place of birth; age at death; date of death; place of death; cause of death; marital status; details of parents; details of children; Coroner details; and funeral director details.

Registry Health Service Management http://www.phrn.org.au/for-researchers/data-collections-available/victoria/

WA Registry of Births, Deaths and Marriages

Birth Registrations

The Register includes all children born and subsequently registered in Western Australia. Stillbirths (deaths in utero that occur after 20 weeks gestation or at greater than 400 grams) are recorded in the Births Register. In addition to the administrative Birth Registration information additional information is collected for stillbirths on the Medical Certificate of Cause of Perinatal Death. Where there is sign of life at birth, but the neonate subsequently dies, the birth is recorded in the Births Register and the death is recorded in the Deaths Register. Although stillbirths are registered as a birth, for reporting purposes these are accounted for in perinatal death statistics.

The Birth Registration Statement contains the details prescribed by Regulation, including, but not limited to: details of the baby such as name, sex, birth weight and whether a multiple birth; date and place of birth; and details of the parents and previous children.

Registry Health Service Management http://www.phrn.org.au/for-researchers/data-collections-available/western-australia/ http://www.datalinkage-wa.org.au/sites/default/files/Birth_registration_data_dictionary_0.doc

WA Department of Health

Midwives Notification System

The information collected in the MNS is about pregnancy care, services and outcomes. This includes demographic, medical and obstetric information about the mother; and information on the labour, delivery and condition of the infant.

The scope of the MNS is all births in WA public and private hospitals, and home births, this includes women whose usual place of residence is outside WA who gave birth in WA. It records data for any birth of at least 20 weeks gestation, or when the gestation is unknown, where the birth weight is at least 400 grams, including all live births and stillbirths. Information on women resident in WA who gave birth outside Western Australia are not included.

State Government Health Service Management http://www.health.wa.gov.au/healthdata/statewide/midwives.cfm

WA Department of Health

Mental Health Information System

The Mental Health Information System collects data about people who use public mental health services in Western Australia. It is a patient based information system in which each patient is allocated a unique number. Data for each person contains demographic information and clinical information from outpatient clinics and hospital visits.

State Government Health Service Management http://www.phrn.org.au/for-researchers/data-collections-available/western-australia/ http://www.mentalhealth.wa.gov.au/Libraries/pdf_docs/WAMHInfo_MHIS.sflb.ashx

WA Department of Health

Emergency Department Data Collection

The EDDC contains data on emergency department activity in Western Australia's public hospitals, as well emergency department activity from private hospitals under contract with the WA Government. In addition to data specifically related to episodes of care in emergency departments (e.g. triage category, presentation date and time), the collection also includes demographic data (e.g. name, date of birth)

State Government Health Service Management http://www.health.wa.gov.au/healthdata/docs/EDDC_dictionary.pdf

WA Department of Health

Hospital Morbidity Data Collection

The Hospital Morbidity Data System is a database of information about hospital visits. The collection began in 1970 and includes summaries of all hospital visits for patients admitted to public and private hospitals in Western Australia.

The data collection is comprised of summary inpatient records since 1970, which is the data about patient visits to hospitals and wait list data since 1991 (data about people waiting for elective surgery). The collection of morbidity information is authorised under law by the Hospitals and Health Services Act 1927.

State Government Health Service Management http://www.health.wa.gov.au/healthdata/resources/hmds.cfm

WA Department of Health

Cancer Registry

The WA Cancer Registry provides population-based statistics about cancer incidence, mortality, and case fatality (survival) for the residents of South Australia. The WA Cancer Registry collects a minimum data set for each cancer case, including such elements as place of residence, sex, date of birth, date of diagnosis, cancer site and morphology, means of diagnosis, whether there were multiple primary sites of cancer, race, country of birth, and date, place and cause of death, where applicable.

Registry Health Service Management http://www.health.wa.gov.au/wacr/home/services.cfm http://aihw.gov.au/wa-cancer-registry/

WA Registry of Births, Deaths and Marriages

Death Registrations

The Register includes all deaths that occur in Western Australia. Stillbirths or deaths in utero that occur after 20 weeks gestation or at greater than 400 grams are recorded in the Births and Deaths Register.

The Death Registration Statements contains the details prescribed by Regulation, including but not limited to: demographic details such as name at birth, Aboriginal/Torres Strait Islander status, sex, occupation, date and place of birth; age at death; date of death; place of death; cause of death; marital status; details of parents; details of children; Coroner details; and funeral director details.

Registry Health Service Management http://www.phrn.org.au/for-researchers/data-collections-available/western-australia/ http://www.datalinkage-wa.org.au/sites/default/files/Mortality_Data_Variables_1.doc

AIHW

National Death Index

The National Death Index (NDI) is a database, housed at the Australian Institute of Health and Welfare, which contains records of all deaths occurring in Australia since 1980. The Index is designed to facilitate the conduct of epidemiological studies and its use is strictly confined to medical research.

The NDI database comprises the following variables for each deceased person: name, date of birth (or estimated year of birth), age at death, sex, date of death, State/Territory of registration, registration number. Cause of death information in a coded form is also available. For records to 1996, only the code for underlying cause of death is available. For records from 1997, the codes for the underlying cause of death and all other causes of death mentioned on the death certificate are available.

Federal Government Health Research http://www.aihw.gov.au/national-death-index/

DoH, Australian Government

National Admitted Patient Care Dataset

Contains de-identified patient level hospital separation information including patient demographics, hospital episode and clinical information (ICD-10-AM);
All admitted patients in public and private hospitals.

Federal Government Health Service Management http://www.health.gov.au/internet/main/publishing.nsf/Content/health-casemix-data-collections-about

DoH, Australian Government

Elective Surgery Waiting Times Additions and Removals

Contains de-identified information on patients waiting for elective surgery and patients removed from the waiting list.
All admitted patients in public and private hospitals.

Federal Government Health Service Management http://www.health.gov.au/internet/main/publishing.nsf/Content/health-casemix-data-collections-about

DoH, Australian Government

Elective Surgery Waiting Times Census

Contains de-identified information on patients on elective surgery waiting lists who are yet to be admitted to hospital or removed for another reason;
All patients on elective surgery waiting lists on a census date who are 'ready for care'. Census dates are 30 September, 31 December, 31 March and 30 June.

Survey Health Service Management http://www.health.gov.au/internet/main/publishing.nsf/Content/health-casemix-data-collections-about

DoH, Australian Government

Non-admitted Patient Emergency Care

Contains de-identified information on patients presenting to Emergency Departments. The information includes patient demographics, arrival and departure status, triage category and waiting time information.
Non-admitted patients registered for care in emergency departments in selected public hospitals that are classified as either Peer Group A or B in the Australian Institute of Health and Welfare's Australian Hospital Statistics publication from the preceding financial year.

Federal Government Health Service Management http://www.health.gov.au/internet/main/publishing.nsf/Content/health-casemix-data-collections-about

DoH, Australian Government

Outpatient Care Dataset

Contains outpatient care information for each financial year including outpatient clinic types, total number of group sessions, and total number of occasions of service.;
All public hospitals.

Federal Government Health Service Management http://www.health.gov.au/internet/main/publishing.nsf/Content/health-casemix-data-collections-about

DoH, Australian Government

Public Hospital Establishment Collection

Contains public hospital information including expenditure, revenue, staffing, beds and services provided.
All public and private hospitals.

Federal Government Health Service Management http://www.health.gov.au/internet/main/publishing.nsf/Content/health-casemix-data-collections-about

DoH, Australian Government

National Hospital Cost Data Collection (NHCDC)

Contains component costs per DRG based on patient-costed and cost-modelled information. (Enables DRG Cost Weights and average costs for DRGs for acute in-patients to be produced).

Federal Government Health Service Management http://www.health.gov.au/internet/main/publishing.nsf/Content/health-casemix-data-collections-about

DoH, Australian Government

The Hospital Casemix Protocol (HCP) data collection

Contains de-identified information on insured patientsメ hospital separations, including information on patient demographics, clinical information (ICD-10-AM), hospital charges, medical information, medical charges, prosthetic items, prosthetic charges, health fund benefits and consumer out of pocket expenses.
Source: All health funds.

Federal Government Health Service Management http://www.health.gov.au/internet/main/publishing.nsf/Content/health-casemix-data-collections-about

DoH, Australian Government

Private Hospital Data Bureau (PHDB)

Contains de-identified information on private hospital separations, including patient demographics, hospital episode, clinical information (ICD-10-AM) and hospital charges for all patients in private hospitals.
Private hospitals and day facilities.

Federal Government Health Service Management http://www.health.gov.au/internet/main/publishing.nsf/Content/health-casemix-data-collections-about

UNSW

National Perinatal Data Collection (NPDC)

The National Perinatal Data Collection (NPDC) is a national population-based cross sectional data collection of pregnancy and childbirth. The data are based on births reported to the perinatal data collection in each state and territory in Australia. Midwives and other staff, using information obtained from mothers and from hospital or other records, complete notification forms for each birth. Information is included in the NPDC on both live births and stillbirths of at least 400 grams birthweight or at least 20 weeks gestation.

Federal Government Health Service Management https://npesu.unsw.edu.au/data-collection/national-perinatal-data-collection-npdc

AIHW

National Community Mental Health Care database

The National Community Mental Health Care Database (NCMHCD) contains data on community (also sometimes termed ムambulatoryメ) mental health service contacts provided by government-funded community mental health care services as specified by the Community mental health care (CMHC) National Minimum Data Set (NMDS) (see link). The NCMHCD includes data for each year from 2000ヨ01 to 2011ヨ12. The NCMHCD includes information relating to each individual service contact provided by an in-scope mental health service. Examples of data elements included in the collection are demographic characteristics of patients, such as age and sex, clinical information, such as principal diagnosis and mental health legal status, and service provision information, such as contact duration and session type.

Health Research, Health Service Management http://meteor.aihw.gov.au/content/index.phtml/itemId/617724

AIHW

National Residential Mental Health Care database

The National Residential Mental Health Care Database (NRMHCD) contains data on episodes of residential care provided by government-funded, 24-hour staffed, residential mental health services in Australia. The inclusion of government-funded, non-government-operated services and services that are not staffed for 24 hours a day is optional. Examples of data elements included in the collection are demographic characteristics of residents, such as age and sex, and clinical information, such as principal diagnosis and mental health legal status.

Health Research, Health Service Management http://meteor.aihw.gov.au/content/index.phtml/itemId/617728

DoH, Australian Government

National Notifiable Diseases Surveillance System

National Notifiable Diseases Surveillance System (NNDSS) collects laboratory confirmed notifiable data from states and territories of Australia in accordance with the Health Security Act 2007 and the National Health Security Agreement 2008.

Federal Government Health Service Management https://data.gov.au/dataset/c281af42-3c27-496b-90e4-b2b688e56838

AIHW

National Diabetes Register

The National (insulin-treated) Diabetes Register (NDR) is an ongoing database that is the responsibility of the Australian Institute of Health and Welfare (AIHW). It collects information about people who use insulin as part of their treatment for diabetes. Data items collected include: Sex Date of birth State/territory of usual residence Indigenous status Diagnosis date Diabetes type Country of birth Main language spoken at home

Health Research, Health Service Management http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/3414.0main+features52011%20(Edition%202)

AIHW

National non-admitted patient emergency department care database (NAPEDCD)

The NNAPEDCD is compiled by the AIHW from data supplied by the state and territory health authorities. It is a collection of electronic confidentialised summary records for presentations to public hospital emergency departments.
The data elements listed below form part of the National Minimum Data Set for Non-admitted patient emergency department care.

State or territory of hospital
Type of visit to emergency department
Triage category
Date and time patient presents
Waiting time to commencement of clinical care
Length of non-admitted patient emergency department service episode
Arrival mode
Episode end status
Sex of patient
Indigenous status of patient
Date of birth
Area of usual residence

Federal Government Health Service Management http://www.aihw.gov.au/hospitals-data/national-non-admitted-patient-emergency-department-care/

AIHW

Alcohol And Other Drug Treatment Services (Aodts Nmds)

The data from 2001-02 onwards contain information about alcohol and other drug treatment services which are government funded; the clients who use these services; the types of drug problems for which treatment is sought and the types of treatment provided.

Federal Government Health Service Management http://www.aihw.gov.au/details-datacat/?dataCatId=8284

AIHW

Commonwealth State/Territory Disability Agreement (Cstda) Minimum Data Set

The Commonwealth State/Territory Disability Agreement National Minimum Data Set (CSTDA NMDS) was set up in 1994. It contains information about services directly provided, or funded, by government under the umbrella of the CSTDA. The collection was originally a 'snapshot' collection, before being redesigned to include full year data from 2003-04. The National Disability Agreement (NDA) replaced the CSTDA on 1 January 2009. As a result of the implementation of the NDA, from 2009-10 the CSTDA NMDS was renamed the Disability Services National Minimum Data Set (DS NMDS)

Federal Government Health Service Management http://meteor.aihw.gov.au/content/index.phtml/itemId/518043

AIHW

Health And Welfare Expenditure Database

Provide a picture of health expenditure in Australia, by area of expenditure and funding, and to examine changes over time. It includes EXPENDITURE FUNDING SOURCES and EXPENDITURE OUTPUT

Federal Government Health Service Management http://www.aihw.gov.au/details-datacat/?dataCatId=22

AIHW

Expenditure Funding Sources

Health expenditure data are obtained from these sources.

Federal Government Health Service Management http://www.aihw.gov.au/details-datacat/?dataCatId=6780

AIHW

Expenditure Output

Health and welfare expenditure data are published annually through bulletins in health and welfare.

Federal Government Health Service Management http://www.aihw.gov.au/details-datacat/?dataCatId=6781

AIHW

Health Labour Force Statistics

These data are obtained from the respective professional groups, viz., medical, nursing, podiatry, pharmacy, occupational therapy, podiatry, physiotherapy, optometry and psychology.There are also data on higher education and migration of health professionals.

Federal Government Health Service Management http://www.aihw.gov.au/details-datacat/?dataCatId=6360

AIHW

National Outpatient Care Database

The NOCD is compiled by the AIHW from data supplied by the state and territory health authorities. It is a collection of summary data for outpatient clinic occasions of service in public hospitals.

Federal Government Health Service Management http://www.aihw.gov.au/hospitals-data/national-outpatient-care-database/

AIHW

National Public Hospital Establishments Database

Collection of resources, expenditure and services data for all public and repatriation hospitals in Australia.

Federal Government Health Service Management http://www.aihw.gov.au/hospitals-data/national-public-hospital-establishments/

AIHW/ABS

National Survey Of Mental Health Services

DoH funded survey of all specialised public mental health services compiled by AIHW/ABS

Federal Government Health Research Catalogue of Holdings of AIHW Data http://www.abs.gov.au/ausstats/abs@.nsf/mf/4326.0

Medicare

MBS Data

Administrative data to facilitate billing in the form of MBS and PBS item codes, no clinical notes.

Federal Government Health Service Management http://www.health.gov.au/internet/main/publishing.nsf/Content/PHN-MBS_Data

Medicare

PBS Data

Drug Utilization Data. Comprehensive drug utilisation data are required for a number of purposes including pharmacosurveillance and the targeting and evaluation of quality use of medicines initiatives. It is also needed by regulatory and financing authorities and by the Pharmaceutical Industry. A major aim of the ASM has been to put comprehensive and valid statistics on the Australian use of medicines in the public domain to allow access by all interested parties

Federal Government Health Service Management https://www.pbs.gov.au/info/browse/statistics

ABS

Australian Aboriginal and Torres Strait Islander Health Survey: First Results, Australia, 2012-13

As part of the Australian Health Survey, the Australian Aboriginal and Torres Strait Islander Health Survey (AATSIHS) which commenced in April 2012 collects information from the Aboriginal and Torres Strait Islander population in non-remote areas and remote areas, including discrete communities. It combines the existing ABS National Aboriginal and Torres Strait Islander Health Survey (NATSIHS) together with two new elements - a National Aboriginal and Torres Strait Islander Nutrition and Physical Activity Survey (NATSINPAS) and a National Aboriginal and Torres Strait Islander Health Measures Survey (NATSIHMS).
Includes:
- estimates of the prevalence of certain chronic diseases and conditions and selected behavioural risk factors- including physical activity participation and sedentary behaviour
- objective measures of selected chronic diseases, nutrition status and other risk factors which can be combined with self-reported data about health status and conditions (e.g. diabetes)
- health risk factors and outcomes for different population groups of interest, such as different age groups and people living in remote and non-remote areas.

Survey Health Service Management http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/4727.0.55.001main+features902012-13

ABS

Patient Experiences in Australia: Summary of Findings, 2014-15

The ABS Patient Experience Survey is conducted annually and collects data on access and barriers to a range of health care services, including: GPs, medical specialists, dental professionals, imaging and pathology tests, hospital admissions, emergency department visists.Contains summary data on access and barriers to a range of health care services, including general practitioners, medical specialists, dental professionals, imaging and pathology tests, hospital admissions and emergency department visits. Includes data from people that did not access health services as well as from those who did and enables analysis of health service information in relation to particular population groups.

Federal Government Health Service Management http://www.abs.gov.au/ausstats/abs@.nsf/mf/4839.0

ABS

National Survey of Mental Health and Wellbeing: Summary of Results, 2007

The survey provides information on the prevalence of selected lifetime and 12-month mental disorders by three major disorder groups: Anxiety disorders (eg Social Phobia), Affective disorders (eg Depression) and Substance Use disorders (eg Alcohol Harmful Use). It also provides information on the level of impairment, the health services used for mental health problems, physical conditions, social networks and caregiving, as well as demographic and socio-economic characteristics.

Survey Health Service Management http://www.abs.gov.au/ausstats/abs@.nsf/mf/4326.0

ABS

National Nutrition Survey Selected Highlights Australia, 1995ᅠᅠ

This publication presents selected data from the 1995 National Nutrition Survey which collected information on food and nutrition from the Australian population. Information is provided on food beverage consumption, nutrient intake, eating habits, and dietary attitudes. Physical measurements, such as body mass index, are also included.

Survey Health Service Management http://www.abs.gov.au/ausstats/abs@.nsf/mf/4802.0

ABS

Disability, Ageing and Carers, Australia: Summary of Findings, 2012

1 This publication presents first results from the 2012 Survey of Disability, Ageing and Carers (SDAC) conducted throughout Australia from 5 August 2012 to 2 March 2013. This is the seventh comprehensive national survey conducted by the Australian Bureau of Statistics (ABS) to measure disability, following similar surveys in 1981, 1988, 1993, 1998, 2003 and 2009.

2 The aims of the survey were to:

measure the prevalence of disability in Australia
measure the need for support of older people and those with disability
provide a demographic and socio-economic profile of people with disability, older people and carers compared with the general population
estimate the number of and provide information about people who provide care to people with disability, long-term health conditions and older people.

Federal Government Health Service Management http://www.abs.gov.au/ausstats/abs@.nsf/mf/4430.0

ISCRR

Compensation Research Database (CRD)

The CRD is a unique Australianᅠdatabase, providing researchers with access to over 20 years' worth of information about transport and workplace injury in Victoria. The CRD contains information on claims and payments processed by the TAC and WorkSafe from 1987 and 1986 respectively.

Additionally, the WorkSafe datasets also include information on services and medical certificates

Federal Government Health Service Management http://www.iscrr.com.au/evidence-data-and-research/using-data/compensation-research-database-crd

ISCRR

WorkHealth Database

The WorkHealth program was established by WorkSafe in 2008, with a specific aim to reduce the risk of chronic preventable diseases (such as type 2 diabetes and cardiovascular [heart] disease), among Victorian workers and explore the links between chronic disease and workplace injury.
As part of the WorkHealth program, over 800,000 workers went through health checks and provided consent for the data from these checks to be used in future research activities.
Even on its own, this data holds great potential for researchers. For example, it could used to identify sectors of the workforce most at risk of chronic disease, and therefore more at risk of serious workplace injury or illness.

Federal Government Health Service Management http://www.iscrr.com.au/evidence-data-and-research/using-data/workhealth-database

ISCRR

ComPARE (Compensation Policy and Return to Work Effectiveness) Database

The ComPARE Database is a version of the National Dataset of Compensation Based Statistics compiled by SafeWork Australia, and provided to ISCRR with the permission of the nation's workers compensation authorities. It contains information on claims made in each workers' compensation jurisdiction in Australia from mid-2003 through to 2014. In total the database includes case-level information for over 3.5 million workers' compensation claims.

The database includes fully de-identified information on the injured worker, their employment circumstances, injury, and compensation benefits and payments. The database is being used by ISCRR to undertake the ComPARE project, but is not available for broader use.

Federal Government Health Service Management http://www.iscrr.com.au/evidence-data-and-research/using-data/compare-database

Monash University -ᅠSchool of Public Health and Preventive Medicineᅠ

The Australian and New Zealand Society of Cardiac and Thoracic Surgeons (ANZSCTS) National Cardiac Surgery Database Program

The ANZSCTS National Cardiac Surgery Database Program is the only registry in Australia which records details of all adult cardiac surgical procedures performed in participating Units. The program publishes comprehensive annual reports describing the activities and outcomes of participating units in a comparative, de-identified format.

Registry Health Research, Health Service Management http://anzscts-database.org/

Monash University -ᅠSchool of Public Health and Preventive Medicineᅠ

Victorian Orthopaedic Trauma Registry

VOTOR was established through a collaborative project involving Monash University (DEPM), The Alfred (Department of Trauma Surgery) and the RMH (Department of Orthopaedics). The registry is a comprehensive database of orthopaedic injuries, treatment, complications and outcomes based on admissions to the adult Major Trauma Service (MTS) hospitals in Victoria.ᅠᅠ

Registry Health Research, Health Service Management http://www.med.monash.edu.au/epidemiology/traumaepi/orthoreg.html

Monash University -ᅠSchool of Public Health and Preventive Medicineᅠ

Victorian Cardiac Outcomes Registry (VCOR)

The Victorian Cardiac Outcomes Registry (VCOR) is a state-wide, population-based clinical quality registry. It is a centralised quality assurance project aiming to improve the quality of care provided to patients with cardiovascular disease.
VCOR collects data about patients undergoing relevant cardiac treatments, procedures and interventions and follows up on medical outcomes and complications up to 30 days after a patient has been discharged from hospital. This information is used to then report the outcomes of interventions and treatments back to hospitals and relevant stakeholders to help determine what factors contribute to and promote better patient outcomes. It also helps to identify what issues may be impeding more successful outcomes in some settings.

Registry Health Research, Health Service Management http://www.vcor.org.au/

Monash University -ᅠSchool of Public Health and Preventive Medicineᅠ

Australian Rheumatology Association Database (ARAD)

ARAD is a national Australian database which collects important health information from individuals with inflammatory arthritis. The aim of ARAD is to determine the short and long term effectiveness and safety of new biological drugs used to treat inflammatory arthritis conditions.
ARAD collects information from patients every 6 months via questionnaires. Questions about medical history, medication history, responses to medication, physical functioning and quality of life are included.

Registry Health Research, Health Service Management https://arad.org.au/Public/Home.aspx

Monash University -ᅠSchool of Public Health and Preventive Medicineᅠ

Bi-national Burns Registry

Significant burn injury is a distinct and important component of the overall burden of injury in Victoria and across Australia. The Bi-NBR provides valuable information on the incidence and aetiology of burn injury across Australia and New Zealand

Registry Health Research, Health Service Management http://www.med.monash.edu.au/epidemiology/traumaepi/burnsreg.html

Monash University -ᅠSchool of Public Health and Preventive Medicineᅠ

Massive Transfusion Registry (MTR)

Currently, no registry exists to monitor massively transfused patients in the acute setting either to understand current practice, or to track the occurrence of adverse events. An additional focus of the MT Registry will be to gain information on safety, efficacy, appropriateness of useᅠand dosages of adjunctive agents used in the treatment of critically bleeding patients.

Registry Health Research, Health Service Management http://www.torc.org.au/sites/default/files/mtr_dataset.pdf

Monash University -ᅠSchool of Public Health and Preventive Medicineᅠ

MIG ヨ Melbourne Interventional Cardiology Registry

The MIG Registry is a collaborative effort among 6 public hospitals in Melbourne and Geelong. We aim to provide reliable medium- & long-term results (morbidity and mortality) of coronary interventions across Melbourne hospitals. Data on all patients undergoing a percutaneous coronary intervention (PCI) i.e. either an angioplasty or a stent, performed in participating hospitals are collected and entered onto a central database.

Registry Health Research, Health Service Management http://www.med.monash.edu.au/sphpm/depts-centres-units/registries/mig.html

Monash University -ᅠSchool of Public Health and Preventive Medicineᅠ

Pancreatic Surgery Registry

The Pancreatic Cancer Registry will monitor patterns and quality of care provided to patients diagnosed with pancreatic cancer.

Registry Health Research, Health Service Management http://www.med.monash.edu.au/sphpm/depts-centres-units/registries/pancreatic.html

Monash University -ᅠSchool of Public Health and Preventive Medicineᅠ

Prostate Cancer Registry (PCR)

The PCR focuses on describing patterns of care following diagnosis of prostate cancer and monitoring quality of delivererd care and whether it is in line with evidence-based guidelines.ᅠᅠ

Registry Health Research, Health Service Management http://pcr.registry.org.au/Home.aspx

Monash University -ᅠSchool of Public Health and Preventive Medicineᅠ

Victorian State Trauma Registry (VSTORM)

The Department of Human Services (now Department of Health) commissioned the Victorian State Trauma Registry (VSTR) in 2001 in collaboration with the Transport Accident Commission Health Research. The registry provides a mechanism to monitor the system to inform service provision and development with an aim to reduce preventable deaths and permanent disability from major trauma.ᅠ Changes to systems of care are monitored to ensure outcomes are improving including the reduction in deaths and disability over time.

Registry Health Research, Health Service Management http://www.med.monash.edu.au/sphpm/depts-centres-units/registries/vstr.html

Monash University -ᅠSchool of Public Health and Preventive Medicineᅠ

Victorian Lung Cancer Registry

The VLCR aims to record all newly diagnosed lung cancer cases in participating sites in Victoria. Information from the registry will be used to monitor care provided, including treatment, complications and both short and longer term outcomes of care. This information will be used to help identify trends and whether gaps exist in service provision.

Registry Health Research, Health Service Management http://www.med.monash.edu.au/sphpm/depts-centres-units/registries/vlcr.html

Monash University -ᅠSchool of Public Health and Preventive Medicineᅠ

Myeloma and Related Diseases Registry (MRDR)

The aims of the Myeloma & Related Diseases Registry are to: monitor access to care;benchmark outcomes nationally and internationally; explore variation in practice, process and outcome measures; monitor trends in incidence and survival; explore the factors that influence outcomes including survival and quality of life; act as a resource for clinical trials

Registry Health Research, Health Service Management http://www.med.monash.edu.au/sphpm/depts-centres-units/registries/mrdr.html

Monash University -ᅠSchool of Public Health and Preventive Medicineᅠ

Neonatal Alloimmune Thrombocytopenia (NAIT)

The aims of the NAIT Registry are to: 1. better define the incidence, natural history and clinical outcome of NAIT 2. provide information on the range of therapeutic strategies being employed in the treatment of NAIT patients 3. explore factors influencing clinical outcomes 4. better define optimal management of NAIT patients 11:55 AM 15/01/20165. inform and inspire future hypothesis-driven research in this area

Registry Health Research, Health Service Management http://www.med.monash.edu.au/sphpm/depts-centres-units/registries/nait.html

Monash University -ᅠSchool of Public Health and Preventive Medicineᅠ

Registry of Kidney Diseases (ROKD)

The aims of the ROKD are to more accurately: define the incidence, natural history, and clinical characteristics of specific renal diseases ユ characterise the diversity of clinical outcomes and the impact of co-morbidities ユ capture the range of therapeutic strategies and associated outcomes; and to:ユ use the collected data to assist with determining optimal managementユ establish consistent identifiers of this data set with the ANZDATA set, thereby allowing clinicians to understand the impact of disease from モdiagnosis to dialysis/transplantation and/or deathヤ ユ evaluate the costs associated with the above provision of care, and finally ユ inform and facilitate future hypothesis-driven research in this area.

Registry Health Research, Health Service Management http://www.med.monash.edu.au/sphpm/depts-centres-units/registries/rokd.html

Monash University -ᅠSchool of Public Health and Preventive Medicineᅠ

Thrombotic Thrombocytopenic Purpura (TTP)

The TTP Registry aims to: - better define the incidence, natural history and clinical outcome of TTP - provide information on the range of therapeutic strategies being employed in the treatment of TTP patients - explore factors influencing clinical outcomes - better define optimal management of TTP patients inform and inspire future research.

Registry Health Research, Health Service Management http://www.med.monash.edu.au/sphpm/depts-centres-units/registries/ttp.html

Monash University -ᅠSchool of Public Health and Preventive Medicineᅠ

Venous Thromboembolism cohort study (VTE)

The aims of the VTE Cohort Study are to:1. better define the incidence, natural history and clinical outcome of VTE 2. provide information on the range of therapeutic strategies being employed in the treatment of VTE patients 3. explore factors influencing clinical outcomes 4. better define optimal management of VTE patients 5. inform and inspire future hypothesis driven research in this area

Registry Health Research, Health Service Management http://www.med.monash.edu.au/sphpm/depts-centres-units/registries/vte.html

Monash University -ᅠSchool of Public Health and Preventive Medicineᅠ

Bariatric Surgery Registry

The bariatric surgery registry aims to: 1) Record the immediate safety of bariatric surgery in Australia and NZ.2) Study longitudinally the safety and efficacy of bariatric surgery in Australia and NZ.3) Track key health changes following bariatric surgery in Australia and NZ.

Registry Health Research, Health Service Management http://www.med.monash.edu.au/sphpm/depts-centres-units/registries/bariatric-surgery.html

Monash University -ᅠSchool of Public Health and Preventive Medicineᅠ

New Australian Breast Device Registry

The Australian Breast Device Registry is a clinical quality register for high risk implantable breast devices (implants and expanders). It tracks the outcomes and quality of all breast device surgery performed across Australia. It will report progressively on the long term performance of implanted devices with the aim of improving patient safety.

Registry Health Research, Health Service Management http://www.abdr.org.au/

University of Sydney

BEACH - Bettering the Evaluation and Care of Health

The BEACH Program continuously collects information about the clinical activities in general practice in Australia including

- characteristics of the GPs
-patients seen
-reasons people seek medical care
-problems managed, and for each problem managed -(direct link)
-medications prescribed, advised, provided, clinical treatments and procedures provided
-referrals to specialists and allied health services
-test orders including pathology and imaging

Registry Health Research http://sydney.edu.au/medicine/fmrc/beach/index.php

The Aboriginal Health Forum (AHF) comprising of representatives from the DoHA, Aboriginal Medical Services Alliance (AMSANT) and Northern Territory DHCS

Northern Territory Aboriginal Health Key Performance Indicators (NT AHKPI)

Demographics and Clinical Data of users of community health services.

Registry Health Service Management http://www.nt.gov.au/health/ahkpi/

CCRE, Monash University, Melbourne

Australian Cardiac Procedures Registry (ACPR)

In November 2008 the Australian Commission on Safety and Quality in Health Care appointed CCRE Therapeutics to undertake a large-scale project involving the validation of Australian Clinical Registries.

This initiative builds on the successful conduct of the Australian Society of Cardiothoracic Surgeons Victorian database project and the Melbourne Intervention Group PCI registry.

Utilising the framework established from the existing cardiac surgical and PCI registries, and the development work from implantable devices, the aim of this project is to:
a) enhance and develop the merger of two existing clinical registries in cardiac surgery and percutaneous cardiac intervention (PCI) into a scalable national cardiac procedures registry that will improve the reliability of information acquisition across all contributing locations, and
b) develop an additional module that will extend the registry information collection to include implantable devices such as pacemakers and implanted defibrillators. The development of such modules will enhance the cardiac registry functionality to provide a common platform to enhance its national utility.

The target population for this registry activity is patients, practitioners and policy makers. A Cardiac Procedural Registry is crucial to ensure that all patients are getting the best possible treatment and achieving the best outcomes. Patients are entitled to know the likely outcome of various treatments, with appropriate risk adjustments, in order to make informed choices. A cardiac procedures registry would be an invaluable tool for clinicians, allowing them to review practice, compare outcomes to a "standard" and make changes to improve practice. Individual sites performing coronary revascularisation, and implanting cardiac devices procedures only have internationally published cohort data with which to compare outcomes

Registry Health Research, Health Service Management https://acpr.org.au/

Department of Epidemiology and Preventive Medicine
(DEPM) Monash University, Melbourne.

Australian Society of Cardiothoracic Surgeons Database Project (ASCTS)

The Australasian Society of Cardiac and Thoracic Surgeons (ASCTS) National Cardiac
Surgery Database Program is a clinical registry of patients undergoing surgical
procedures in Australia. The project is an initiative and responsibility of ASCTS and
involves standardised data collection across hospitals. The ASCTS database is currently
the only compilation of cardiac surgical procedures and outcomes in Australia.
The database includes details of all patients undergoing cardiac surgical procedures in
participating hospitals, including full details of demographic, pre-operative, procedural
and outcome data, including mortality. Data is collected by staff at participating sites and
is transmitted to a secure, web-based central database located at Monash University,
Department of Epidemiology and Preventive Medicine (DEPM).

Registry Health Research, Health Service Management http://www.registries.org.au/registries/registrydocs/asctsdocs/ascts_project_details_10.pdf

Biogrid Australia

ACCORD Comprehensive Cancer Patient Database

ACCORD (the Australian Comprehensive Cancer Outcomes and Research Database) is a web-based application for the collection and management of information relating to cancer patients diagnosis, treatment and outcomes. Through a simple user interface, ACCORD enables clinicians to review and update patient information at any time, including within clinics.

ACCORD datasets have been designed specifically for each tumour stream using national and international standards where possible and in consultation with oncology healthcare professionals. These datasets include demographic, surgery, pathology, chemotherapy, radiotherapy, recurrence and follow-up information.

Registry Health Research, Health Service Management https://www.biogrid.org.au/page/11/how-does-biogrid-australia-work

Royal Australasian College of Surgeons

Bi-National Colorectal Cancer Audit (BCCA)

Patients undergoing resection or treatment for colorectal cancer are recorded

Registry Health Service Management http://www.surgeons.org/for-health-professionals/audits-and-surgical-research/morbidity-audits/bcca/

Royal Australasian College of Surgeons

National Breast Cancer Audit (NBCA)

The database contains over 150,000 episodes of breast cancer, with over 300 surgeons contributing data each year from across Australian and New Zealand.

Registry Health Service Management http://www.registries.org.au/nbca.html

Cancer Institute, NSW

SSWAHS Clinical Cancer Registry

The SSWAHS Clinical Cancer Registry became operational in January 2006. A team of 6 Cancer Information Managers are responsible for identifying the cases and collecting the NSW Clinical Cancer Minimum Data Set. There are 50 data items in the minimum data set covering demographic, disease, treatment, quality of care and access to cancer services and survival but not all of them are applicable to every case of cancer. The registry only collects cancers that are notifiable to the NSW Central Cancer Registry which excludes most squamous and basal cell skin cancers, cervical dysplasia and non-invasive bladder cancers.

Registry Health Service Management http://www.swslhd.nsw.gov.au/cancer/ccr.html

Cancer Institute, NSW

NSW Oncology Group: Colorectal

The NSW Oncology Group (NSWOG) was established by the Cancer Institute NSW in August 2005, involves approximately 700 cancer specialist doctors and nurses, consumers, patients and planners

Registry Health Service Management http://www.registries.org.au/registries/nsw_oncology_colorectal.html

SA Health's Infection Control Service

South Australian Infection Control Surveillance database

The Infection Control Service (ICS) is part of the Communicable Disease Control Branch of the South Australian Department of Health, funded since July 2003. The ultimate aim of the Infection Control Service is the minimisation of health care associated infections within South Australia. South Australian hospitals currently contribute the following surveillance data on a voluntary basis to the Infection Control Service, Communicable Disease Control Branch: Health care associated bloodstream infection; Methicillin-resistant Staphylococcus aureus (MRSA); Expanded multi-resistant organisms (MRO); Antibiotic utilisation.

Regular reports are sent to contributing hospitals containing the individual hospital data and the aggregated State data for comparison.

MRSA and antibiotic utilisation reports are generated monthly. Geographics Coverage includes All metro hospitals and two rural hospitals (Private -public -16). MRSA since Sept 2001, BSI since 1997 in 7 teaching hospitals but now all hospitals contributing data, all HAI since 2003.

Registry Health Research, Health Service Management http://www.registries.org.au/registries/sa_infection_control.html

VICNISS Coordinating Centre, Doherty Institute

Victorian Infection Control Nosocomia Infection Surveillance System (VICNISS)

Established in 2002, the program is coordinated by the VICNISS Coordinating Centre, which collates and analyses data on healthcare associated infections and reports data back to participants and to the Department of Health and Human Services. VICNISS is primarily concerned with preventing infections in hospital settings, however increasingly healthcare occurs in outpatient and community settings such as dialysis facilities or hospital in the home. Surveillance activities are targeted to those patients at highest risk of healthcare associated infections

Registry Health Research, Health Service Management http://www.registries.org.au/registries/vicniss.html

ANZICS CORE

Adult Patient Database (APD)

The Adult Patient Database (APD) contains data from over 1,300,000 patient episodes and is one of the largest single datasets on intensive care in the world. The database collects episodes from over 140 intensive care units from Australia and New Zealand on a quarterly basis. This data is used to benchmark the performance of individual contributing units. Analysis of data is reported back to contributing ICUs via an on-line reporting tool, the CORE Portal.

Registry Health Research, Health Service Management http://www.anzics.com.au/pages/CORE/apd.aspx

ANZICS CORE

ANZICS Paediatric Intensive Care (A?NZPICR) Registry??

The Australian and New Zealand Paediatric Intensive Care (ANZPIC) Registry was established by the ANZICS Paediatric Study Group in 1997 with three aims:
ユTo describe paediatric intensive care practices and outcomes in Australia and New Zealand.
ユTo provide contributing units with efficacy and efficiency reports that compare performance in their units against national and international standards.
ユTo facilitate research in paediatric intensive care.

The Paediatric Study Group oversees the strategic development of the Registry. The Registry is located at the Lady Cilento Children's Hospital, Brisbane and is managed by the ANZPIC Registry Clinical Advisory Committee, the Registry Director, and the? Registry Manager. There are links with other ANZICS projects through the Centre for Outcome and Resource Evaluation (CORE).

In Australia six PICU's exist in the state capitals. The Australian Capital Territory (ACT), the Northern Territory (NT) and Tasmania (TAS) do not have designated PICU's, although Tasmania has a combined NICU/PICU. Outside state capitals, some children are admitted to Level III Adult ICU's, whilst other children are transported to specialised PICU's. In all states, children with cardiac conditions are admitted to specialist PICU's.

In New Zealand, the Starship Children's Hospital in Auckland is the tertiary referral centre for paediatrics, including cardiac surgery. There is one specialist PICU at the Starship Children's Hospital. In some regions of New Zealand children are commonly admitted to adult ICU's.

Registry Health Research, Health Service Management http://www.anzics.com.au/pages/CORE/ANZPICR-registry.aspx

ANZICS CORE

Critical Care Resources (CCR) Registry

The CCR survey investigates the provision and utilisation of critical care resources in Australia and New Zealand. The survey captures data on physical resources such as the number and types of beds; enumerates data relating to admissions, bed days, ventilation, readmissions and other resource indicators; estimates medical and nursing staffing levels; and collects data on various aspects relating to safety and quality in critical care units.

The CCR survey is conducted annually by financial year, and targets more than 200 adult and paediatric critical care units in Australia and New Zealand. The CCR Survey was established in 1993, and holds data relating to almost 20 years of ICU activity. As of 2010/11 the survey utilised an online tool to facilitate the collection and reporting of data.

The online survey tool provides units with a range of reports on the submitted data, including Unit Detail, Comparative and Time Series reports. Comparative Reports for the 2013/14 CCR Survey are available via the CCR Survey tool. The CCR data is an important resource for clinicians and policy makers providing data useful for forward planning and health services research.

CCR annual reports are provided to contributing hospitals, departments of health, national and state libraries, professional societies and associations and made publicly available through the ANZICS CORE website. Please visit the CORE Reports page? to view the 2013/14 CCR Annual Report.

Registry Health Research, Health Service Management

ANZICS CORE

Central Line Associated Bloodstream Infection (CLABSI) Registry????

The ANZICS CORE CLABSI Registry was launched in July 2012 providing a national registry and reporting system enabling ICUs to compare their CLABSI rate against peer units throughout Australia.

In most states data that is being submitted to the CLABSI Registry will be through the state based surveillance bodies with the exception of Northern Territory and Tasmania, where data is being submitted by individual participating ICUs. For further assistance please contact the CORE Manager?.

Registry Health Research, Health Service Management http://www.anzics.com.au/pages/CLABSI.aspx

Discipline of Public Health

University of Adelaide

Australian Orthopaedic Association (AOA) National Joint Replacement Register (NJRR)

The Australian Orthopaedic Association National Joint Replacement Registry (AOANJRR) is an initiative of the Australian Orthopaedic Association (AOA). The AOANJRR was established in 1999 becoming fully national in mid 2002. The purpose of the AOANJRR is to improve and maintain the quality of care for individuals receiving joint replacement surgery. Information on hip, knee, shoulder, elbow, wrist, ankle and spinal disc replacement is collected from all hospitals in Australia undertaking joint replacement surgery.

The AOANJRR is entirely funded by the Commonwealth Department of Health.

Registry Health Research, Health Service Management https://aoanjrr.sahmri.com/

University of Wollongong

Australasian Rehabilitation Outcomes Centre (AROC)

A defined dataset is collected against all inpatient rehabilitation episodes (orthopaedic, stroke, brain injury, amputee, etc). Coverage includes public and private sector. An ambulatory dataset is in the process of being rolled out.

Registry Health Service Management http://ahsri.uow.edu.au/aroc/whatisaroc/index.html

Department of Epidemiology and Preventive Medicine Monash University

Australian Rheumatology Association Database (ARAD)

It is a national Australian database which collects important health information from individuals with inflammatory arthritis such as: Rheumatoid arthritis Ankylosing spondylitis Juvenile arthritis Psoriatic arthritis ARAD collects information from patients every 6 months via questionnaires. Questions about medical history, medication history, responses to medication, physical functioning and quality of life are included.

Registry Health Research, Health Service Management https://arad.org.au/Public/Home.aspx

Breast Screen Victoria

Breast Screen Victoria

Data of woman over the age of 40 years who has a mammography in the Breast Screen Australia program.

Registry Health Service Management https://www.breastscreen.org.au/Home

Victorian Cytology Service Limited (VCS Ltd)

Cervical Cytology Registry

All pap tests performed in Victoria

Registry Health Service Management http://www.vccr.org/

Medicare Australia

National Bowel Cancer Screening Program

The National Bowel Cancer Screening Program (NBCSP) Register records persons who have been invited to participate in the NBCSP, the results of their initial pathology test (positive of negative) and where they undergo further screening through health professionals associated with bowel cancer screening, the results of that screening. The data base is used to generate correspondence, monitor progress through the screening process, provide reports to authorised recipients and monitor the performance of the NBCSP. People who are within the eligible population will be invited to take part in the program. The eligible population is Australians turning 50 years of age between January 2008 and December 2010, and those turning 55 or 65 between July 2008 and December 2010, who hold a Medicare card or DVA gold card. From 1 May 2006 to 30 June 2008 the eligible population was defined as those turning 55 or 65 years of age during the period 1 May 2006 to 30 June 2008.

Registry Health Research, Health Service Management http://www.cancerscreening.gov.au/internet/screening/publishing.nsf/Content/about-the-program-register-1

MND, NSW

Australian Motor Neuron Disease Registry (AMNDR)

The Australian Motor Neurone Disease Registry is a clinical database that provides a means to facilitate the collection and analysis of MND patient data such as demographics, site of onset, diagnosis data, treatment type, changes in functional capacity, complications related to disease progression and the impact of new treatments and interventions for MND. The goals of the registry are to improve patient care through continuous evaluation of patient management and associated outcomes and to form significant scientific research collaborations with organisations and individuals to further the understanding of MND.

Registry Health Service Management http://www.mndnsw.asn.au/about-mnd/mnd-research/54-participating/153-australian-mnd-registry-amndr.html

Cystic Fibrosis, Australia

Australian Cystic Fibrosis Data Registry

Data of Persons diagnosed with Cystic Fibrosis whose condition is managed at a specialist CF treatment centre in an Australian Hospital. Registry follows patient up over more than one episode of care.

Registry Health Service Management http://www.cysticfibrosis.org.au/cfa/data-registry

ANZOD, Adelaide, Australia

Australia and New Zealand Organ Donation Registry (ANZOD)

Data of all deceased organ donors in Australia and New Zealand. Donors are followed from hospitalisation through death and then determine the outcome of each organ.

Registry Health Service Management http://www.anzdata.org.au/anzod/v1/indexanzod.html

ANZCOTR C/- St Vincents Hospital Sydney, Heart Transplant Unit

Australian and New Zealand Cardiothoracic Organ Transplantation Registry (ANZCOTR)

Data on new transplants along with updates relating to previous recipients is continuously supplied by Transplant Coordinators at the Alfred Hospital (Melbourne), Auckland City Hospital (New Zealand), Prince Charles Hospital (Brisbane), Royal Perth Hospital, Royal Childrenメs Hospital (Melbourne) and St Vincents Hospital (Sydney). The Registries main office is currently situated in the Heart and Lung transplant unit, L4 Xavier building, St Vincents Hospital, Darlinghurst, Sydney, Australia.

Registry Health Research, Health Service Management http://www.registries.org.au/registries/cardiothoracic_organ.html

ANZDATA, Adelaide, South Australia

Australian and New Zealand Dialysis and Transplantation Registry (ANZDATA)

ANZDATA collects a wide range of statistics which relate to the outcomes of treatment of those with end stage renal failure.

All renal units in Australia and New Zealand participate.

Registry Health Service Management http://www.registries.org.au/registries/anzdata.html

Princess Alexandra Hospital, Brisbane

Australian and New Zealand Liver Transplantation Registry (ANZLTR)

The ANZLTR is a collaborative effort of the liver transplant units in Australia and New Zealand. The ANZLTR includes all patients listed for liver transplantation in Australia or New Zealand.The aims of the ANZLTR are the collection, collation and reporting of data realating to activity and outcomes of liver transplantaion in the region. Data on all patients listed for liver transplantation and their subsequent outcome is supplied by all the participating units. The coordinating centre responsible for monitoring the data quality and the preparation and publication of the ANZLTR Annual Report.

Registry Health Service Management http://www.registries.org.au/registries/anz_liver_transplantation.html

Department of Ophthalmology, Flinders University and Flinders Medical Centre, Adelaide

Australian Corneal Graft Registry

The Australian Corneal Graft Registry operates an Australia-wide register of human corneal transplants.

The purpose of the Register is to collect information that will inform clinical practice and to identify risk factors for poor patient outcomes. It currently contains records of over 14,000 transplants, some of which have been followed for over 15 years.

All information is de-identified, to maintain confidentiality of the database.

Registry Health Service Management https://www.flinders.edu.au/medicine/sites/ophthalmology/clinical/the-australian-corneal-graft-registry.cfm

Australian and New Zealand Burn Association (ANZBA) and Monash University, Department of Epidemiology and Preventive Medicine (DEPM).

Bi-national Burns Registry (Bi-NBR)

The Bi-National Burns Registry is data repository capturing information about adult & paediatric patients with new burn injuries admitted to all Australian and New Zealand burns units. The aims of the registry are to: describe the epidemiology of burn injuries & inform the development of burn injury prevention strategies in Australia and New Zealand; to monitor the type & quality of burn care management; to establish the clinical outcomes of burn patients; to improve service planning; to develop best practice clinical guidelines initiatives, and to benchmark performance indicators on a state, national and international level.

Registry Health Service Management http://www.registries.org.au/registries/anz_burns.html

Centre of National Research on Disability and Rehabilitation Medicine (CONROD), University of Queensland

Queensland Trauma Registry or CONROD

The Queensland Trauma Registry (QTR) was developed by CONROD in 1998 to encompass Royal Brisbane & Women's, Princess Alexandra, Royal Children's and Mater Children's Hospitals. In 2002 the QTR was expanded to include Cairns, Townsville, Mount Isa, Rockhampton, Mackay, Redcliffe, Caboolture, Nambour, Ipswich, Toowoomba and Gold Coast Hospitals, and in 2009 to include Robina, Logan, Bundaberg, Maryborough and Hervey Bay Hospitals. Data from the Queensland Health Statistics Centre suggest that these 20 hospitals are generally where seriously injured patients are treated, or transferred for treatment, in Queensland. Subjects are Trauma cases meeting the following criteria;
(1) > 14 years admitted to a registry hospital site for > 24hrs on initial presentation for treatment of an injury and are codeable to an ICD-10 category from S00-S99, T00-T35, T63, T66-T71, T75;
(2) <14 years and admitted to a registry hospital site for > 24hrs on initial presentation for treatment of an injury and are codeable to an ICD-10 category from S00-S99, T00-T75, T78 (Appendix 7);
(3) Patients who die during ED presentation after active treatment in the ED;
(4) Patient who die during hospital admission

Registry Health Service Management http://conrod.org.au/cms/resources-and-tools/queensland-trauma-registry

SATR

South Australian Trauma Registry (SATR)

28695 individuals. All patients suffering severe physical trauma and managed in any one of six metropolitan hospitals.

Three major trauma services and three urban trauma services from within South Australia and North Territory

Registry Health Service Management http://www.registries.org.au/registries/sa_trauma.html

Royal Perth Hospital

Trauma registry, Royal Perth Hospital

Collects information on all trauma patients who are admitted for at least 24 hours, or who die from their injuries & provides an extensive trauma database for trauma-related activities and research. The Registry is also responsible for many Quality Improvement activities, including Mortality and Missed Injuries Audits, and provides an extensive descriptive annual report on all eligible trauma admissions to RPH. Trauma Registry data is also used to evaluate patient care & trauma-related hospital initiatives, & assist with strategic & resource planning for both the hospital & the adult state trauma system. Subjects: All trauma admissions that are admitted for more than 24 hours in an acute hospital. All injuries that occur within past 7 days. All patients admitted to Western Australian hospitals. Patients might be admitted from interstate or internationally (Bali)

Registry Health Service Management http://www.registries.org.au/registries/trauma_rph.html

VSTORM, DEPM, Monash University

Victorian State Trauma Outcomes Registry and Monitoring (VSTORM) Group

The Department of Human Services commissioned the Victorian State Trauma Registry (VSTR) in collaboration with the Transport Accident Commission Health Research. The registry provides a mechanism to monitor the system to inform service provision and development with an aim to reduce preventable deaths and permanent disability from major trauma. Changes to systems of care are monitored to ensure outcomes are improving including the reduction in deaths and disability over time.The registry collects and analyses patient information from health services managing trauma patients across the state.ᅠ The registry collects information from 138 hospitals.

Registry Health Research, Health Service Management http://www.med.monash.edu.au/epidemiology/traumaepi/traumareg/

Australian and
New Zealand Society for Vascular Surgery (ANZSVS).

Australasian Vascular Audit

The Australasian Vascular Audit (AVA) was established in 2008 after constitutional changes had been
adopted following a ballot with an overwhelming majority by the membership of the Australian and
New Zealand Society for Vascular Surgery (ANZSVS). This had been a long-term goal of the Society
with the aim of amalgamating the existing vascular audits throughout Australia and New Zealand.
The audit is compulsory, with membership of the ANZSVS conditional upon participation in audit.
Both public hospital and private practice data are collected at 2 points in the admission episode; at
admission/operation and after discharge and only patients undergoing a surgical or endovascular
procedure are entered in the database. Although all procedures are captured in the database, for selected index procedures.

Registry Health Service Management http://www.anzsvs.org.au/audit/history-of-the-audit/?sstat=420