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Applicant: Geelong HospitalApproval valid until 31 December 2016
Critical care treatment of patients can at times be limited in its ability to improve mortality outcomes and in some situations can lead to a death that is more burdensome on patients, families and resources. Although there are guidelines in place to assess whether a patient's condition warrants critical care, no research has been done to examine the implementation of these guidelines and subsequent outcomes. Appropriate information in this area can potentially optimise hospital resource usage and improve better end of life care.
The aim of this study is to describe the number, characteristics, interventions, and outcomes of patients that meet criteria for treatment limitation yet are referred to a tertiary critical care service. The study aims to describe the care of these patients after referral, their outcomes, and if they do not survive, collect information about their end-of-life care.
Linkage of 1,200 records to the NDI will be undertaken in order to obtain date of death, cause of death and state/territory of registration.
Applicant: Menzies School of Health ResearchApproval valid until 30 June 2022
The NT has the highest rate of suicide and deliberate self-harm of any jurisdiction in Australia, especially amongst its Aboriginal residents. This research aims to create an important part of the evidence base needed to inform suicide prevention strategies in the NT.
This study will describe the characteristics, morbidity and mortality outcomes of those who attended a hospital in the NT for deliberate self-harm (DSH) (ie attempted suicide or intentional self harm) between 2000 and 2012, inclusive. It will also incorporate an analysis of health service utilisation of such cases for Aboriginal people, in order to better identify opportunities and strategies for prevention in this high-risk group.
Linkage with the National Death Index will be undertaken to obtain date of death, year of death registration, state/territory of death registration, cause of death code and codes of other causes of death.
The study comprises two main components, referred to as Stage 1 and Stage 2. Stage 1 is an analysis of hospitalisations in the NT for DSH and their outcomes between 2000 and 2012. Stage 2 is an analysis of the patterns of health service utilisation of the Indigenous cases from the study population identified in Stage 1.
Applicant: Canberra HospitalApproval valid until 30 October 2020
The cardiology department at the Canberra Hospital compiles a database of patients who have undergone coronary angioplasty and stenting procedures. The database is used for monitoring the effectiveness and the incidence of adverse events during long term follow up of patients after PCI/stent procedures. Linkage of the database to the NDI will be undertaken to obtain fact of death and date of death to improve the accuracy of the follow up information contained in this database.
Applicant: Westmead HospitalApproval valid until 31 March 2015
Dialysis patients generally have an abnormally elevated level of phosphate in the blood (hyperphosphemia) as a result of chronic renal failure, and this can lead to a number of complications. Phosphate binders are a group of medications used to reduce the absorption of phosphate and are used almost universally in the dialysis patient population. There are a number of different classes of phosphate binders. There is some evidence that the traditional and widely used non calcium-based phosphate binders have an increased risk of mortality due to cardiovascular disease, as compared to the newer, but more expensive, non-calcium phosphate binders.
This project is a national, retrospective cohort study that aims to compare the effects on survival of the displacement of calcium-based phosphate binders by the newer non calcium-based phosphate binding agents, sevelamer and lanthanum, in patients on dialysis. The study has the capacity to establish whether these costly agents provide patient-level benefits to Australians on dialysis in a real life situation, and inform the selection of phosphate binding drugs that could improve patient survival. The study will examine the mechanisms that result in the poor survival and high cardiovascular mortality of patients on dialysis.
The AIHW, acting as the integrating authority will undertake linkage with the adult Australian dialysis patient data stored in the ANZDATA registry to the Pharmaceutical Benefits Scheme (PBS) to obtain prescription data for both classes of phosphate binders from 2002 onwards. (sevelamar and lanthanum were PBS listed in 2007-08), as well as other drugs used in treating side effects and comorbidities in dialysis patients
Applicant: Translational Research InstituteApproval valid until 31 December 2014
Patients with Rheumatoid Arthritis (RA) have increased morbidity and mortality from premature cardiovascular disease (CVD). Up to 50% of this excess mortality is secondary to ischaemic heart disease in the standardised mortality ratio due to CV events compared to the general population. The fact that premature CVD causes a significant health burden to RA patients necessitates the development of guidelines advising on how this increased CV should be identified and managed. Due to scarcity of long-term CV outcome data from RA patients, much of the guidance available has been extrapolated from CV studies performed in the general population. This project is a 10 year follow up.
Linkage with the National Death Index will be undertaken to determine cause and date of death, as some patients may have died in another hospital or at home and their death not recorded in their hospital notes.
Applicant: University of MelbourneApproval valid until 31 December 2020
Ten to Men is Australia's first nationwide longitudinal study of male health and is funded by the Commonwealth Department of Health. Participants will complete a questionnaire about their health status, social and environmental determinants of health and health-related behaviours including health service use. Data collection for the baseline wave of the study will commence in September 2013. The project aims to provide information on the determinants of male health and wellbeing aimed at building an evidence base to inform policy and programs to address health inequities between men and women and different groups of Australian males (e.g., males living in regional areas compared to capital city areas). Annual linkage to the National Death Index will be undertaken to obtain date and cause of death.
Applicant: Austin HealthApproval valid until 30 November 2016
Chronic heart failure (CHF) is associated with high mortality and morbidity rates. Several treatments for CHF have resulted in hospital admission reductions and improvements in survival and quality of life. This project is an update to the Austin Health Heart Function Clinic mortality audit first carried out in 2006. The project aims to determine the mortality rate, analyse the relationships between cause of death, the underlying desease process and heart function therapies and to optimise patient care. Demographic, clinical and mortality data will be analysed to compare survival in patients as a function of different HF management strategies and the relative significance of specific therapies.
Linkage with the National Death Index (NDI) will be undertaken to determine fact and date of death, all causes of death and state of death registration.
Applicant: University of New South WalesApproval valid until 31 December 2016
This project is a retrospective epidemiological sample cohort study of hospitalised child injury in Australia. The burden and causes of paediatric injury by injury severity are not clear, and a more accurate snapshot of the incidence and characteristics of severe injury and related follow-up care are needed. The aim of the research is to estimate and describe the burden of hospitalised childhood injury and related follow-up care; to determine the severity of the injuries experienced and factors influencing survival. The research will better inform injury prevention strategies, research priorities, trauma system design, health service planning and resource needs for injured children in Australia.
Linkage between the State and Territory Hospital data to the National Death Index (NDI) will be undertaken to obtain date and all causes of death, calculated age at death and month, year and state/territory of registration.
Applicant: Monash UniversityApproval valid until 1 January 2018
The primary objective of this project is to establish a massive transfusion registry in Australia and New Zealand to collect fundamental data on transfusion practice and patient outcomes in the setting of critical bleeding (CB) and massive transfusion (MT). The Massive Transfusion Registry (MTR) collects information on patients who have experienced serious blood loss that required a large replacement of blood (i.e. massive transfusion).
Ongoing linkage will be undertaken to obtain the fact, date and cause of death for each identified patient from the National Death Index to analyse survival rates.
Applicant: Repatriation General HospitalApproval valid until 1 December 2015
Treatment of prostate cancer is a health priority for the Australian community. Prostate cancer is diagnosed in 1 in 5 men who reach the age of 85 years and a large number of treatment options are available. One of these options is androgen deprivation therapy. Androgen deprivation therapy is currently recommended for patients with advanced prostate cancer.
This treatment may have side effects such as osteoporosis, heart attacks, stroke, diabetes, loss of muscle mass and depression. At present there are no clear guidelines as to how these medications can be given to patients in such a way as to maximize survival and minimise side effects.
Applicant: Burnet InstituteApproval valid until 30 September 2018
This study is intended to provide insights into the complex relationships between incarceration, drug use, physical/mental health, service access and reoffending/recidivism. This is a longitudinal study where prisoners pending release from Victorian prisons will be interviewed and blood samples collected shortly prior to release, with follow-up interviews conducted at three, twelve and twenty four months post-release. These data will be supported by extensive record linkage with health (Medicare, justice health, hospitalisation, emergency department presentations, ambulance attendances, mental health, drug dependence treatment) and criminal justice (Victoria Police, Corrections Victoria, Justice Health) databases and paper records where appropriate. Findings will aim to inform policy and services for this high-risk population and help prevent morbidity and recidivism
Linkage with the National Death Index will also be undertaken to establish if people in the study have died and their causes of death.
Applicant: NT Department of HealthApproval valid until 31 December 2018
The primary objective of this project is to investigate the survival rates and mortality trends of rheumatic heart disease (RHD) patients over time and to validate the causes of death recorded in the RHD register by performing data-linkage to the National Death Index every 3 to 5 years. The secondary objective is to investigate the survival rates and mortality trend of serious complications in RHD patients, specifically stroke, endocarditis, atrial fibrillation and heart failure.
Comorbidity and Trauma Study (CATS) (EO 2014/1/81)
Applicant: National Drug and Alcohol Research CentreApproval valid until 31 December 2021
The aim of this study is to examine the role, causes and predictors of mortality and patterns of engagement with participants on Opoid Substitution Therapy. Data linkage between the NSW Pharmaceutical Drugs of Addiction System and the National Death Index will be undertaken.
Applicant: Australian Cystic Fibrosis Data RegistryApproval valid until 31 March 2021
Cystic Fibrosis Australia operates the Australian Cystic Fibrosis Data Registry (ACFDR) in collaboration with the Directors of all cystic fibrosis (CF) treatment centres at Australian hospitals. Annual data collected since 1998 include date and summary cause of death of patients who have died over that period. The proposal is to obtain, through data linkage with the National Death Index, information to verify and augment the date and cause of death information recorded in the ACFDR for persons who have died over the period from 1998 until the most recent available date.
Applicant: Australian Orthopaedic Association National Joint Replacement RegistryApproval valid until 31 December 2016
As the rate of total hip and knee replacement has continued to increase it is critical to determine the long-term consequence of total joint replacement (TJR) to assess risk versus benefit. Data are conflicting for an association between TJR and overall cancer risk. Metal-on-metal (MOM) total hip replacements have been widely used over the last decade, particularly in younger patients.
Linkage with the Australian Cancer Database (ACD) and Australian Orthopaedic Association National Joint Replacement Registry (AOANJRR) will be undertaken to establish whether TJRs are associated with increased incidence of cancer
Applicant: Monash UniversityApproval valid until 1 August 2021
The Australian and New Zealand Society of Cardiac and Thoracic Surgeons (ANZSCTS) database is a Clinical Quality Registry which stores information from different sites providing cardiac surgery and recruits patients continually. The purpose of the database is to monitor and improve the safety and quality of cardiac surgery in Australia. The information collected is used to monitor the treatment provided to patients, track serious complications and to understand more about treatment outcomes. It enables the identification of trends and/or gaps that may exist in service provision. Data are also used for research purposes in order to improve cardiac surgery.
Linkage to the National Death Index (NDI) to identify patients who have died beyond 30 days after their procedure, will be undertaken in order to report on long term outcomes of cardiac surgeries, thus providing researchers with additional information to identify trends and/or gaps that may exist in service provision.
Applicant: Cancer Institute NSWApproval valid until 30 June 2017
The Cancer Institute NSW reports quality, process and outcome indicators for cancer treatment in NSW at a state, Local Health District (NSW Ministry of Health administrative areas) and facility level. The reporting program aims to inform health system performance improvement through the investigation, monitoring and evaluation of patterns of treatment and treatment outcomes.
In order to measure mortality and survival outcomes of people diagnosed with cancer in NSW, linkage from NSW Central and Clinical Registries to the National Death Index (NDI) will be undertaken to obtain complete ascertainment of death.
Applicant: Royal Brisbane and Woman's HospitalApproval valid until 31 December 2015
This study extends on previous research conducted at the Royal Brisbane and Women's Hospital, Department of Emergency Medicine and prospectively validates a new clinical decision rule (the ANZAP rule) to rapidly diagnose chest pain. The ANZAP pathway enables patients presenting with chest pain to be risk stratified up to four hours earlier than the current system. It utilises patient characteristics, clinical findings and ECG analysis, in addition to the cardiac biomarkers, to identify patients at risk for acute coronary syndrome (ACS), enabling more rapid diagnosis and treatment.
Patients in this study are treated according to the newly developed protocol, then followed up 30-days post visit. As an additional assessment, one-year follow up data will be collected to identify whether any major cardiac events occurred outside the hospital setting.
Linkage to the National Death Index (NDI) will be undertaken to identify deceased patients to ensure that these patients are not followed-up. The data will also be used to identify the long term outcomes of an accelerated chest pain pathway. The data required from the NDI includes death status, date of death and all causes of death (including all causes)
Applicant: The George Institute for Global HealthApproval valid until 1 March 2016
Cardiovascular disease (CVD) is the leading cause of death and disease burden. Data show that approximately half of all CVD events occur in those who have had a prior hospital episode for coronary heart disease (CHD). However, if survivors of Acute Coronary Syndrome (ACS) attend secondary prevention programs and adhere to risk factor modification including drug regimens then their hospital readmissions within one year may be reduced and their survival improved.
The TEXTMEDS study represents a multi-centre randomised controlled trial across 18 Australian sites of 1,400 participants with prior ACS who will be followed for 12 months. The purpose is to investigate whether sending mobile phone text messages with advice about healthy living and preventing heart disease and offering expert advice over the phone to patients who have a high risk of cardiovascular events, will improve their risk factors after 12 months. The primary outcome is to determine whether participants in the intervention group are more adherent than the control group in taking their medications and thus reduce their risk of future cardiovascular events.
Linkage with the National Death Index (NDI) will be undertaken to establish date and cause of death.
Applicant: Royal Childrens HospitalApproval valid until 30 June 2018
The AEDI measures early childhood development for around 98% of the 261,099 school entry children for 2009. The B Cohort of LSAC is a sample of 5,107 children recruited in 2004 collecting information on their experiences within their families and communities, their health, their child care experiences and the early years of their education. Consent has been sought on both the AEDI and LSAC to combine the data collected with data from other sources.
Linkage between the Australian Early Development Index (AEDI) 2009 and the B Cohort of the Longitudinal Study of Australian Children (LSAC) will be undertaken
Applicant: Austin HealthApproval valid until 31 December 2014
The purpose of this study is to investigate the relationship between clinical, coronary anatomical and procedural factors and long-term outcomes of patients with acute and stable obstructive coronary artery disease undergoing percutaneous coronary intervention (PCI).
The research may identify potential predictors of the long-term outcomes of patients undergoing emergent or elective PCI. Information gained from the study could potentially result in a change of practice in systems of care and procedural aspects of PCI at Austin Hospital.
Linkage with the National Death Index will be undertaken with results being used to analyse survival rates and mortality outcomes of patients. The data will also be used as part of the quality assurance project at Austin Health.
Royal Melbourne HospitalApproval valid until 31 December 2016
The main objective of this study is to analyse the long-term individual responses of antiepileptic drug treatment and assess any risk factors for the treatment outcome by following up patients at a number of Victorian hospitals who commenced the treatment since 2003. It will also describe the nature of service utilization in patients who have been diagnosed with epilepsy.
Premature mortality is acknowledged internationally as a major problem in epilepsy. Despite evidence of this serious problem, there are little data available to inform prevention and the Australia-specific data of risk of mortality in epilepsy is scant. A task force lead by the peak consumer organisations has been formed in recognition of the need to work with researchers to obtain this data, which should provide information about mortality in newly treated epilepsy patients in Australia.
Data Linkage will be undertaken between the study cohort to the National Death Index to obtain both date of death and cause of death
Applicant: University of MelbourneApproval valid until 31 August 2015
This project will investigate whether recipients of the Australian Human Pituitary Hormone Program (AHPHP) hormones will have an increased risk of neurodegenerative diseases through inoculation of disease-causing misfolded proteins, which were derived from human pituitary glands. The Australian National CJD Registry (ANCJDR) plans to evaluate the incidence of neurodegenerative diseases on death certificates of the recipient cohort, relative to age and sex-matched controls from the general population.
Data linkage will be undertaken between the Australian Human Pituitary Hormone Program (AHPHP) recipient data held by the Department of Health and the National Death Index to identify AHPHP recipient deaths.
Applicant: Griffith University and Gold Coast University HospitalApproval valid until 1 September 2016
The population of older adults (≥65 years) in Australia is projected to double within 50 years and will be accompanied by increased need for access to intensive care services, making resource allocation and associated health care costs a significant consideration. The importance of identifying potentially modifiable factors that might impact on patient outcome is required to optimise therapeutic recovery for critically ill, older adults.
The aim of this study is to describe and compare the differences in non-modifiable and potentially modifiable predictors of death and complications in three subgroups of critically ill older adults, aged 65 to 74, 75 to 84, and 85 and older. The primary outcome is mortality in hospital or after hospital discharge. Potentially modifiable factors that might influence patient outcomes include functional ability, protein/calorie intake, skin integrity, and hospital-acquired (nosocomial) infections.
This research will further develop our understanding of factors that might contribute to mortality and the development of complications in critically ill, older adults and allow for possible interventions to be developed and tested across a variety of critical care settings
Data Linkage will be undertaken between patient records from the Gold Coast Hospital & Health Service and Princess Alexandra Hospitals ICU Hospital Based Corporate Information System (HBCIS) and the National Death Index to obtain date and underlying cause of death, as well as state/territory of registration.
Applicant: University of MelbourneApproval valid until 31 December 2016
The main overall objective of the project is to estimate the excess amount of breast cancer (i.e. over diagnosis) due to breast cancer screening and to relate this to any reduction in breast cancer mortality due to breast cancer screening. The value of screening has often been questioned because of over diagnosis (and subsequent treatment without benefit) and there have been numerous calls to provide women with better information regarding the harms and benefits of screening. However, because of the uncertainty in current estimates of over diagnosis it is impossible to provide women with useful information, and for policy makers to assess the harms and benefits of screening. The study is designed to provide valid and precise estimates that will be of direct benefit to Australian women and to Australian policy makers and screening providers.
The project involves a cohort of about 66,000 women invited to attend BreastScreen in 1994 and 1995 in Western Australia. Data linkage will be undertaken between the cohort and the National Death Index, the Australian Cancer Database and Medical Benefits Scheme data to obtain (a) date and cause of death, (b) breast cancer diagnoses and (c) information on Medicare-reimbursed mammography to ensure that women who have private mammography are properly classified.
Australian Longitudinal Study of Womens Health (EO 2014/3/110)
Applicant: University of QueenslandApproval valid until 31 December 2030
This study is a longitudinal population-based survey, funded by the Department of Health. The project began in 1996 and examines the health and wellbeing of over 40,000 Australian women. This information from the study has helped to shape and develop relevant policies and services nation-wide that have positively affected the health of participants and the population they represent. Data Linkage between the study cohort and the National Death Index will be undertaken to establish fact and all causes of death. This will enable information on participants who are deceased to be updated, as well as allowing analysis of rates and predictors of mortality.
Applicant: University of New South WalesApproval valid until 31 October 2018
In Australia, hepatitis C virus (HCV) or hepatitis B virus (HBV) infections are associated with increased morbidity, mortality and health-related costs. Effective treatment for both infections is available and is associated with the prevention of HCV- and HBV-related morbidity and mortality. New treatments are also being developed. Given this, the expansion of HCV treatment uptake, and the identification and management of undiagnosed cases of HBV are key components of the National Hepatitis C Strategy 2010-2013 and the National Hepatitis B Strategy 2010-2013. This project will establish an annual prospective population-based surveillance system for monitoring morbidity and mortality among people diagnosed with HCV or HBV infection in NSW. It will evaluate trends and identify populations at increased risk of HCV- and HBV-related morbidity and mortality, and thus generate important data informing future policy to reduce the HCV and HBV burden in NSW.
Data linkage betweem the NSW Notifiable Conditions Information Management System (NCIMS) and the National Death Index will be undertaken to obtain: date and all causes of death as well as sex, month and year of birth, age at death, country of birth and duration of residence in Australia, SLA of residence and state/territory and year of registration.
Data linkage studies to evaluate the association between use of anti-diabetic and cholesterol medications, the Mirena intrauterine device and risk of, and survival from, gynaecological and other cancers (EO 2014/3/116)
Applicant: QMIR Berghofer Medical Research InstituteApproval valid until 31 December 2017
Recent years have seen rising numbers of prescriptions for the levonogestrel-impregnated intra-uterine device Mirena, diabetes medications such as Metformin, and cholesterol lowering medications such as statins. Data linkage will be undertaken between the National Death Index, Australian Cancer Database, Medicare Benefits System and Pharmaceutical Benefits System to explain whether these devices/medications effect cancer risk or influence survival. The results of this study will inform decision making on medication use.
Proportional differences in children's school readiness based on their differential exposure to early childhood services (EO 2014/3/117)
Applicant: Department of EducationApproval valid until 31 December 2015
The aim of this study is to investigate the link between intensity of exposure to early childhood education and care (ECEC) services and childrens school readiness and the roles of different ECEC services in buffering the negative effects of low/high intensity exposure to ECEC services on children's school readiness. It will further quantify the extent to which children's school readiness varies by the differential exposure to ECEC services. Data linkage will be undertaken between the Child Care Management System and the Australian Early Development Index data set.
Risk stratification of the hepatocellular carcinoma development and outcomes using transiet elastography (EO 2014/3/119)
Applicant: Alfred HospitalApproval valid until 31 August 2015
FibroScan is a non-invasive method of assessing liver scarring, termed fibrosis. The aim of this study is to determine the role of FibroScan in predicting outcomes in hepatocellular carcinoma, the most common form of liver cancer and the most rapidly increasing cause of cancer-related death in Australia. The results of this study could lead to more effective hepatocellular carcinoma surveillance and improve the cost-effectiveness of screening. Data linkage will be undertaken between the FibroScan database, the Australian Cancer Database and the National Death Index.
Applicant: Woolcock Institute of Medical ResearchApproval valid until 31 August 2015
The aim of this project is to assess whether there is a difference in the amount of allergy between children who were immunised with two different types of pertussis (whooping cough) vaccine, whole cell pertussis (wP) and acellular pertussis (aP).
Data linkage will be undertaken between the Childhood Asthma Prevention Study (CAPS) participant data with Australian Childhood Immunisation Registry (ACIR) data. Recruitment for the Childhood Asthma Prevention Study was undertaken between 1997 and 2000. The initial cohort was 616 participants and data were collected from 552 children at 18. While CAPS collected information about the vaccinations children received, data regarding the exact type of pertussis vaccine administered wP or aP were not available to parents at the time of data collection. The proposed linkage will provide this additional information for each participant in CAPS.
Australian and New Zealand SNAPSHOT Acute Coronary Syndrome (ACS) (EO 2014/3/121)
Applicant: The George Institute for Global HealthApproval valid until 11 November 2020
This study aims to measure the extent to which access to medical services and utilisation of medicines are associated with health outcomes in people that have survived Acute Coronary Syndrome. These study findings will inform future clinical practice and policy for follow-up care of these people. Data linkage between the Pharmaceuticals Benefits System, Medicare Benefits System and the National Death Index will be undertaken.
Applicant: University of South AustraliaApproval valid until 31 May 2018
ACaDS is one part of a project focussed on developing, then demonstrating, the value of an advanced data system for monitoring cancer stage, co-morbidity and outcomes for Aboriginal people in South Australia. As a partnership between the University of South Australia; the South Australian Health and Medical Research Institute; the Aboriginal Health Council of South Australia; Cancer Council SA and the Beat cancer project; SA NT DataLink; and SA Health, ACaDS has the active oversight of an Aboriginal Community Reference Group. It uses South Australian Cancer Registry data to identify cancer events among Indigenous South Australians and matches these with non-Indigenous controls on the basis of diagnoses, age, sex and diagnosis year.
The objective is to quantify inequalities between Aboriginal and non-Aboriginal Australians in cancer stage, treatment and risk-adjusted survivals then apply these data in targeting services, monitoring implementation and evaluating effects on inequalities. This proposal aims to broaden the project data to include Pharmaceutical Benefits Scheme (PBS) by linkage to obtain information on chemotherapy, co-morbid disease management in primary care and actual and recommended treatment pathways.