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Projects approved by the AIHW Ethics Committee during 2016

NSW and ACT cancer health system performance reporting utilising linked administrative data to examine care, treatment patterns and health outcomes for people with cancer in ACT and NSW (EO 2016/1/224)

Applicant: Cancer Institute NSW
Approval valid until: 01 July 2021

This project seeks to develop a de-identified dataset containing data from several state and territory data sources, including: ACT Cancer Registry; NSW Cancer Registry; ACT and NSW Hospital Admissions; ACT and NSW Emergency Department Data Collections; BreastScreen NSW.

Data will also be drawn from the following Commonwealth data sources: National Death Index (NDI); Medicare Benefits Schedule (MBS); Pharmaceutical Benefits Schedule (PBS).

The final, linked dataset will be used for various purposes, including: 

  • Investigate, monitor and evaluate patterns of care and outcomes for ACT and NSW cancer patients.
  • Evaluate the impact of patient, disease, treatment and socio-demographic factors on cancer incidence and outcomes.
  • Broaden available non-identifiable linked data for health service planning, performance monitoring, and reporting.

Findings will contribute to improved clinical outcomes for ACT and NSW cancer patients.

Aboriginal and Torres Strait Islander Better Cardiac Care data linkage project, Queensland (EO 2016/1/233)

Applicant: Queensland Health
Approval valid until: 30 June 2018

The Australian Health Ministers’ Advisory Council (AHMAC), at the 2013 Closing the Gap Strategic Discussion, highlighted disparities in the incidence of cardiovascular complications and treatment utilisation between Indigenous and non-Indigenous individuals as a major health priority. The Better Cardiac Care for Aboriginal and Torres Strait Islander People project was established to address these disparities.

The objective of this study is to assess the continuum of cardiac care against clinical guidelines and best practice standards. The cohort consists of patients, of all ages, who were first hospitalised in Queensland, during the period 2010/2011 to 2014/2015, with a diagnosis of Ischaemic Heart Disease (IHD), Congestive Heart Failure (CHF), Stroke or Acute Rheumatic Fever/Rheumatic Heart Disease (ARF/RHD).

The study cohort will be linked with the National Death Index (NDI); Medicare Benefits Schedule (MBS); Pharmaceutical Benefits Schedule (PBS).

Findings will inform health service planning to improve the availability and accessibility of treatment for Indigenous individuals with cardiovascular complications.

Sydney Centenarian Study (EO 2016/1/234)

Applicant: University of New South Wales
Approval valid until: 01 July 2018

Australia’s rapidly increasing ageing population, particularly Centenarians, continues to place significant demands on the health system. This project—The Sydney Centenarian Study—a longitudinal investigation, seeks to identify genetic and environmental factors that contribute to quality of life among Sydney residents aged 95 years and over.

The objectives of this study include:

  • Identify the prevalence of major medical and neuropsychiatric disorders
  • Explore quality of life, mental health, physical health, and degree of functional independence.

Data will be linked with the National Death Index (NDI).

Findings will inform health policy and initiatives designed to improve and maintain quality of life among elderly individuals.

The Older Twins Study (EO 2016/1/237)

Applicant: University of New South Wales
Approval valid until: 01 July 2018

The Older Australian Twins Study (OATS) is a comprehensive study of ageing in 600 twins, older than 64 years, recruited through the Australian Twin Registry. A major focus of this investigation is cognitive decline, and establishing the role of genetic and environmental factors.

The OATS cohort will be linked with the National Death Index (NDI) to identify deceased individuals and their cause/s of death.

OATS findings will contribute to a greater understanding of the precursors of cognitive decline. This information can be used to inform early interventions and initiatives that may delay, or even prevent, the onset of cognitive deterioration.

Assessment of breast density as a potential surrogate for efficacy of adjuvant therapy in early breast cancer (EO 2016/1/238)

Applicant: Southern Metropolitan Health/University of Western Australia
Approval valid until: 31 December 2017

Among women, breast cancer is the most common type of cancer diagnosed. The majority of cases are hormone receptor positive. This study seeks to identify factors that may be linked to improved outcomes for women with hormone receptor positive breast cancer.

A study cohort, consisting of approximately 1,900 women registered on the Royal Perth Hospital Breast Unit Database, between 1994 and 2011, will be linked with the Pharmaceutical Benefits Schedule (PBS) to assess treatment adherence and concomitant prescription medication use.

Findings will contribute to the development of initiatives and interventions, designed to optimise outcomes.

Sydney Memory and Ageing Study (SMAS) (EO 2016/1/239)

Applicant: University of New South Wales
Approval valid until: 01 July 2018

The Sydney Memory and Ageing Study (SMAS) was initiated to investigate the prevalence of and progression of cognitive decline in elderly individuals.

The SMAS study cohort will be linked with the National Death Index (NDI) to identify deceased individuals, their age at death and cause/s of death.

Findings will inform policies and initiatives designed to enhance elderly Australians’ quality of life.

National Echo Database Australia (NEDA) (EO 2016/1/243)

Applicant: University of Notre Dame
Approval valid until: 28 February 2023

An objective of this study is to establish a database of individuals with pulmonary hypertension—a common, yet under-diagnosed condition characterised by high blood pressure between the heart and lungs. Both retrospective and prospective data will be collected from digital echo laboratories across Australia.

The Echo database will be linked with the National Death Index (NDI) as part of this study.

The database will facilitate the identification of individuals with pulmonary hypertension, and those at risk of this condition. This should allow health professionals to reduce the burden of disease, and enhance quality of life.

Cushing’s Disease: Understanding the long-term morbidity and mortality in the context of control and relapse (EO 2016/1/244)

Applicant: Royal Adelaide Hospital
Approval valid until: 01 March 2019

This study investigates post-surgery outcomes among patients with Cushing’s Disease—a condition characterised by excessive release of adrenocorticotropic hormone from the anterior pituitary gland.

A cohort will be drawn from national and state-based hospital record data. It will be linked with the National Death Index (NDI) to:

  • Calculate mortality rates
  • Identify remission predictors 
  • Identify mortality predictors

Findings will inform policies and practices designed to improve the management of Cushing’s Disease, and patients’ quality of life.

Life pathways and associated government service usage of NSW out-of-home care leavers (EO 2016/1/245)

Applicant: NSW Treasury
Approval valid until: 30 June 2021

This study seeks to examine life trajectories of young people, leaving out-of-home care (OOHC).

The study scope is individuals aged between 14 and 18 years, who exited OOHC from 1996/97 until the most recent financial year for which data are available.

The OOHC cohort will be linked with several Commonwealth data sources, including Medicare Benefits Schedule (MBS), Pharmaceutical Benefits Schedule (PBS), Centrelink data, Vocational Education and Training, and Higher Education support.

Findings will facilitate the development of policy directions and services for young people after leaving OOHC.

Melbourne Collaborative Cohort Study—Linkage to National Death Index and National Cancer Statistics Clearing House (EO 2016/1/247)

Applicant: Cancer Council Victoria
Approval valid until: 01 April 2026

The Melbourne Collaborative Cohort Study (MCCS) was a large, population-based investigation that prospectively examined known and putative risk factors for cancer and other common chronic disease.

This linkage project will link data from the Melbourne Collaborative Cohort Study (MCCS) with the National Death Index (NDI) and the Australian Cancer Database (ACD).

Findings will contribute to those of the MCCS by further consolidating existing initiatives and interventions that attempt to reduce the burden of disease posed by cancer and other chronic illness, and enhance quality of life.

Study of Heart and Renal Protection—Extended Review (SHARP-ER) (EO 2016/2/225)

Applicant: The George Institute for Global Health
Approval valid until: 01 May 2024

The original SHARP study investigated the effectiveness of cholesterol-lowering treatment among pre-dialysis and dialysis patients. A key objective was to examine the time taken to reach the first occurrence of a major atherosclerotic event. The cholesterol-lowering medication reduced this time by 17 per cent. Despite this finding, gaps still exist in research on reducing the burden of morbidity and mortality associated with kidney disease.

The SHARP-ER study extends the follow-up of the original SHARP study by an additional five years. Using patient visits, telephone contact, hospital record review and linkage to national data registries, this extended follow-up will provide data regarding the long-term effects for patients with chronic kidney disease and end-stage kidney disease.

This project will link the SHARP cohort with the National Death Index (NDI) to obtain mortality data for those who have died since the final SHARP study visit in 2010 until the end of the SHARP-ER study (2015).

Findings in this study will identify the long-term effects of cholesterol-lowering treatment on chronic kidney disease. Health practitioners can use this information to improve medical care for patients with chronic kidney disease, thereby minimising the burden of disease, and enhancing quality of life.

Victorian Cancer Registry—National Bowel Cancer Screening Program Linkage (EO 2016/2/229)

Applicant: Cancer Council Victoria
Approval valid until: 01 June 2020

This project investigates whether variables of inequality—socioeconomic status and distance to services—contribute to the incidence of, and survival from, colorectal cancer in Victoria.

Data from the Victorian Cancer Registry (VCR) will be linked with the National Bowel Cancer Screening Program (NBCSP).

Findings will lead to a greater understanding of factors that influence the variation in both risk and outcomes of colorectal cancer and help to better target interventions, thereby reducing the burden of disease.

Outcomes of repair of atrioventricular septal defect: A multicentre review (EO 2016/2/257)

Applicant: The Royal Children’s Hospital, Melbourne
Approval valid until: 01 January 2020

This project is a retrospective review of outcomes following heart surgery performed on approximately 2,000 children, in particular surgery for atrioventricular septal defects (AVSD). The sample was drawn from paediatric centres in Melbourne, Sydney, Perth, Brisbane and Auckland, of children who had surgery from 1975 onwards.

This project investigates the long-term outcomes of AVSD surgery. It will also study risk factors for patient mortality, while attempting to highlight surgical techniques and interventions associated with improved survival.

The study cohort will be linked with the National Death Index (NDI) to obtain mortality data for deceased patients in the cohort.

Health practitioners can use study findings to enhance survival rates following AVSD surgery.

Liver cancer prevention: Linking viral hepatitis diagnosis, treatment, and outcomes (EO 2016/2/258)

Applicant: The Doherty Institute
Approval valid until: 31 March 2019

Viral hepatitis is now the leading cause of liver cancer, and liver transplants. The aim of this study is to identify individuals most at risk of living with, and suffering adverse outcomes from, viral hepatitis. Another objective is to determine the level of clinical engagement and treatment uptake among those diagnosed with this debilitating condition, and to establish the impact of service access in preventing complications arising from infection.

The study cohort consists of people in Victoria who were the subjects of notification for hepatitis B or C between 1997 and 2014 (approximately 90,000). This cohort will be sourced from the Victorian Public Health Events Surveillance System, and linked with the following data sources: Victorian Admitted Episodes Dataset (VAED); Victorian Emergency Minimum Dataset (VEMD); Victorian Cancer Registry (VCR); National Death Index (NDI); Medicare Benefits Schedule (MBS); Pharmaceutical Benefits Schedule (PBS)

Findings will contribute to the early identification of individuals at risk of viral hepatitis and assist health practitioners in implementing interventions to minimise this risk, as well as adverse outcomes that may result following onset of the condition.

Propensity score survival analysis comparing Ross Procedure with mechanical/bioprosthetic aortic valve replacement in adults less than 60 years of age (EO 2016/2/260)

Applicant: Royal Melbourne Hospital and The University of Melbourne
Approval valid until: 01 July 2020

An aortic valve replacement (AVR) is the most commonly used technique to treat aortic valve disease, and prevent progression to heart failure and, in some cases, death. Prostheses, such as bioprostheses and mechanical valves, have historically been used as replacement valves. Bioprostheses have a functional capacity of approximately 15 years. Mechanical valves, on the other hand, despite being durable, require lifelong anticoagulation with medications such as Warfarin. Both bleeding and clotting complications have thus been linked to AVR with mechanical valves.

The Ross procedure—a more complex surgical technique—is an alternative approach that uses an individual’s pulmonary valve to replace the aortic valve; a homograft is fitted to replace the pulmonary valve. A prominent advantage of this procedure is that it results in an aortic valve that is living and capable of remodelling, and thus overcomes many of the limitations associated with both bioprosthetic and mechanical valves.

The objective of this study is to ascertain which of the available options for AVR—bioprostheses, mechanical valves, and the Ross procedure—are associated with the most optimal long-term survival outcomes.

A study cohort will be linked with the National Death Index (NDI) to obtain mortality data, which will be used as an index of long-term survival outcome.

The study findings could potentially improve survival for people with aortic valve disease.

Incidence of Type I Diabetes in Australian children before and after the introduction of Rotavirus Vaccine: A case-control linkage study (EO 2016/2/262)

Applicant: Murdoch Children’s Research Institute (MCRI)
Approval valid until: 30 June 2018

A large body of research has investigated microbiological and immunological links between viruses and the development of Type I diabetes. Conversely, little is known about whether early vaccination has any impact on the incidence of diabetes in young children.

In Australia, the oral rotavirus vaccine (ORV) was introduced to the routine National Immunisation Program (NIP) for all infants born from 01 May 2007. As an extension of the NIP, a project was undertaken to ascertain whether early infant vaccination against the rotavirus had any impact on the incidence of diabetes in young children. This project sought to examine whether the incidence of Type I diabetes in young Australian children would have decreased in the five years following the introduction of the vaccine.

The present investigation, a retrospective case-control study, will link data from the National Diabetes Services Scheme (NDSS), between 01 July 2002 and 01 July 2012, with the Australian Childhood Immunisation Register (ACIR).
Findings will establish whether rotavirus exposure is either a risk factor for, or a protective factor against, the onset of Type I diabetes in infant children, and help to reduce the burden of this disease among infants and their families.

Efficacy of breast cancer screening in Queensland (EO 2016/2/275)

Applicant: Princess Alexandra Hospital
Approval valid until: 30 December 2017

This study assesses the efficacy of mammographic screening, among Queensland women.

It has the following objectives:

  • Determine the impact of mammographic screening on the rate of breast cancer mortality
  • Examine whether the frequency of mammographic screening has an effect on the incidence of breast cancer mortality
  • Establish the impact of mammographic screening and frequency of screening on the age-standardised incidence rate of late-stage breast cancer.

A study cohort will be obtained from the Queensland Oncology Repository (QOR), which comprises data from various sources, including the Queensland Cancer Registry and Deaths. The scope of the study cohort will be women, who were eligible for mammographic screening in 2000, drawn from the Queensland Electoral Commission.

Data from the study cohort will be linked with the Medicare Benefits Schedule (MBS) to establish attendance at breast cancer screening, and utilisation of related services, for women in the study cohort.

Findings will yield important information about the efficacy of mammographic screening in identifying women at risk of breast cancer, and those with existing tumours. This information can be used to progressively reduce rates of mortality associated with breast cancer among women.

Victorian Cerebral Palsy Register (EO 2016/3/131) 

Applicant: Murdoch Childrens Research Institute  
Approval valid until: 01 November 2023    

The Victorian Cerebral Palsy Register (VCPR) collects and compiles data about Victorian cerebral palsy patients.  

This study has the following objectives: 

  • Ascertain survival rates of cerebral palsy patients 
  • Monitor changes in survival rates 

VCPR data will be linked with the National Death Index to identify deceased patients.

Findings will further contribute to the existing body of knowledge about mortality, and causes of mortality, among cerebral palsy patients. This will assist healthcare professionals to improve the care of cerebral palsy patients.

Examining the association between correctional education and post-release mortality (EO 2016/3/220) 

Applicant: Edith Cowan University
Approval valid until: 22 December 2017

This study investigates the effect of correctional education on re-imprisonment rates, welfare dependency, and employment outcomes. Another objective is to examine whether correctional education reduces the risk of premature mortality.

A prisoner and ex-prisoner cohort will be linked with the National Death Index.

Results will have implications for reducing re-offending (and re-imprisonment) through enhancing ex-prisoners' assimilation into the community.

Clinical, pathological and molecular markers of disease aetiology and outcome in prostate cancer and prostatic diseases (EO 2016/3/256) 

Applicant: Garvan Institute of Medical Research
Approval valid until: 03 September 2021

Prostate cancer is the second leading cause of mortality among Australian men. Healthcare professionals have sought to gain a better understanding of the underlying molecular mechanisms.

This study aims to compile a large tissue resource, and related database, to provide the foundation for further investigation of the genetic basis of prostate cancer. Specific study objectives include:

  • Assess molecular genetic abnormalities in biological samples
  • Examine clinical and pathological factors as predictors of relapse
  • Identify novel genes involved in the occurrence and subsequent disease progression

The study investigators seek mortality data to update patient records. A cohort will be linked with the National Death Index.

Study findings will enable healthcare professionals to target interventions more effectively, reducing mortality and improving quality of life. 

Does pneumococcal vaccination protect against cardiovascular disease? A randomised placebo-controlled double-blind trial (EO 2016/3/271) 

Applicant: University of Newcastle
Approval valid until: 01 February 2021

The growing incidence of cardiovascular disease has prompted healthcare professionals and policymakers to develop initiatives that reduce cardiovascular-related morbidity and mortality. One such initiative-the Australian Study for the Prevention through Immunisation of Cardiovascular Events (AUSPICE), a multi-centre clinical trial-investigates the effectiveness of the pneumococcal vaccine in reducing cardiovascular events.

As part of the AUSPICE study, data will be linked with the National Death Index, Australian Cancer Database, Medicare Benefits Schedule and Pharmaceutical Benefits Schedule.

The potential of the pneumococcal vaccine to protect against cardiovascular disease is of public health significance. Findings will pose implications for reducing cardiovascular-related mortality.

Deaths in young people involved in the youth justice system: Towards evidence-based prevention (EO 2016/3/280) 

Applicant: Griffith University
Approval valid until: 31 December 2019

This study investigates mortality among young people who have had contact with the Queensland Youth Justice System. In particular, it will examine the incidence and causes of premature deaths. Specific objectives include:

  • Describe the incidence, timing, causes, context and risk factors for mortality among young people who had contact with the Queensland youth justice system between 1993 and 2014
  • Identify key psychosocial risk factors, health morbidities, precipitating factors and service contacts for deceased individuals
  • Identify specific interventions and policy reforms that have the potential to reduce mortality among juvenile offenders

A cohort containing individuals who had contact with the Queensland youth justice system between 1993 and 2014 will be linked with the National Death Index.

Study findings will inform policy and assist targeted interventions to reduce premature mortality among juvenile offenders. Furthermore, because young, Indigenous Australians are over-represented in the youth justice system, results will also assist policymakers and healthcare professionals to reduce the gap in life expectancy between Indigenous and non-Indigenous Australians.

Patterns of care in adolescents and young adults with cancer (EO 2016/3/283) 

Applicant: Cancer Council Victoria
Approval valid until: 31 December 2017

Young adult cancer patients typically display low survival rates. Researchers have attributed this poor prognosis to a multitude of factors, including patient, disease and healthcare factors. It should be noted that the delivery of young adult cancer services is often fragmented. Patients may receive treatment at either paediatric or adult facilities.

In response to growing mortality rates among young adult cancer patients, this study seeks to identify the modifiable health-system factors and practices that influence survival.

Data will be linked with the National Death Index.

Study findings will enable policymakers and healthcare professionals to improve survival rates for young adult cancer patients.

Risk and prognostic factors for glioma in Australia (the Australian Genomics and Clinical Outcome of Glioma—Epidemiology Study) (EO 2016/3/284) 

Applicant: University of New South Wales
Approval valid until: 01 February 2018

This project is a population-based, case-control, family study of adults with gliomas-cancers of the brain or spine-and unaffected family members. It will examine the contribution of environmental, lifestyle and occupational factors, and genetic variables to the development of gliomas. This project will also investigate the relationship between these variables and survival rates.

As part of this project, a cohort of adult glioma patients, diagnosed between 2013 and 2016, and unaffected family members, will be linked with the National Death Index and the Australian Cancer Database.

Gliomas have poor prognoses. Furthermore, there have been no prior family-based, case-control studies of gliomas. Through identifying potential risk factors for the onset of gliomas, findings will enable researchers and healthcare professionals to enhance disease prognosis and, ideally, prevent disease onset.

Impact of a multidisciplinary cardiac meeting on short- and long-term mortality outcomes of high-risk cardiac surgery patients (EO 2016/3/289) 

Applicant: Sydney South West Area Health Service - Liverpool
Approval valid until: 31 December 2026

Liverpool Hospital, in New South Wales, Australia, implemented a multidisciplinary cardiac meeting in 2008 to promote long-term survival outcomes of high-risk, cardiac patients.

This project-a retrospective, observational study-examines post-cardiac surgery mortality rates at one, three, five, seven, and ten years.

The Australian and New Zealand Society of Cardiac and Thoracic Surgeons (ANZSCTS) maintain a database of cardiac surgical procedures, and outcomes in Australia, with data from 28 hospitals. This database will be linked with the National Death Index to obtain mortality data for patients who underwent cardiac surgery between 2008 and 2015.

Study findings will provide important information about survival outcomes following cardiac surgery. Healthcare professionals can use this information to improve the management of cardiac patients, thereby enhancing surgical prognoses.

A National approach to measuring non-fatal crash outcomes (EO 2016/3/290) 

Applicant: Flinders University 
Approval valid until: 31 December 2017

Motor vehicle accidents, either fatal or non-fatal, place a significant burden on the healthcare system, and impose substantial financial demands on insurance providers. Australia's road safety agencies have thus attempted to reduce the incidence of motor vehicle accidents through a multitude of safe-driving initiatives. For these agencies to continue to improve road safety, they require up-to-date, national data about motor vehicle accidents that result in either fatal or non-fatal injuries.

The purpose of this study is to inform road safety policies and initiatives through the provision of up-to-date, national data about motor vehicle accidents, and related mortality.

State and territory motor vehicle accident data, and hospital records will be linked with the National Death Index.

Study findings will contribute to the improvement of road safety, and reduced mortality by informing road safety initiatives and enhancing the effectiveness of existing measures.

The Baker IDI Healthy Hearts Clinic (EO 2016/3/295) 

Applicant: Baker IDI Heart and Diabetes Institute 
Approval valid until: 01 September 2017

The Baker IDI Heart and Diabetes Institute has maintained a database of various cardiovascular risk and protective factors for over 15,000 patients.

This project investigates the relationship between various cardiovascular risk factors and mortality-both cardiovascular-related mortality and non-cardiovascular-related mortality.

Data will be linked with the National Death Index.

Healthcare professionals can utilise study findings to improve the detection of individuals at risk of cardiovascular events, reduce the incidence of such events by targeting risk factors, and prevent cardiovascular-related mortality.

A study of the epidemiology of systemic amyloidosis in Queensland (EO 2016/3/298) 

Applicant: Princess Alexandra Hospital, Queensland 
Approval valid until: 10 July 2017

Systemic amyloidosis is a rare condition. It is characterised by abnormal protein deposits in organs and tissues, which can lead to organ dysfunction and, in severe cases, mortality. Due to the rarity of systemic amyloidosis, little is known about its epidemiology.

The purpose of this study is to establish the incidence and prevalence of systemic amyloidosis. Additional study objectives include:

  • Ascertain the impact of age on systemic amyloidosis-related mortality
  • Ascertain the impact of geography and remoteness on systemic amyloidosis incidence and mortality

Study data will be linked with the National Death Index.

Study findings will provide much-needed information about the incidence and prevalence of systemic amyloidosis. Healthcare professionals can use this information to improve detection and management.

SCREEN-HFL (SCReening Evaluation of the Evolution of New Heart Failure)—a Longitudinal Study (EO 2016/4/241) 

Applicant: Monash University
Approval valid until: 31 December 2019

Chronic heart failure has been linked to poor quality of life and, in many cases, premature mortality. In response to the immense burden of disease posed by chronic heart failure, the Screen-HFL, a longitudinal study, was developed. This study examined the extent to which NT-proB-type Natriuretic Peptide (NT-proBNP), a blood-borne substance, was a risk factor for chronic heart failure.

The present study has the following objectives:

  • Determine whether patients with high levels of NT-proBNP are more likely to develop chronic heart failure than patients with low levels of NT-proBNP
  • Determine the incidence of new heart failure, hospitalisations for heart failure, hospitalisations for cardiovascular causes, total hospitalisations, mortality, heart attack and stroke in patients with high levels of NT-proBNP compared to patients with low levels of NT-proBNP.

SCREEN-HF data will be linked with the National Death Index.

Findings will enhance the early detection of individuals at risk of chronic heart failure. Healthcare professionals can target interventions appropriately to improve quality of life and reduce premature mortality.

Improving the health of Indigenous and non-Indigenous ex-prisoners in Australia (HiP-Aus Study) (EO 2016/4/281) 

Applicant: University of Western Australia
Approval valid until: 31 December 2022

A 2011 study found that the annual mortality rate among recently released Australian offenders was approximately 10 times higher than that of incarcerated offenders.

The present study will, for the first time, examine health-related predictors of mortality among ex-prisoners.

A study cohort will be linked with the National Death Index.

Findings will inform evidence-based interventions to reduce ex-prisoner mortality.

Perioperative mortality and morbidity prediction: Application of National Surgical Quality Improvement Program (NSQIP) online calculator and Surgical Outcome Risk Tool (SORT) to neck of femur fracture surgical management (Retrospective multicentre study) (EO 2016/4/282) 

Applicant: Royal North Shore Hospital
Approval valid until: 31 July 2021

This study investigates surgical outcomes among neck of femur fracture patients. A long-term objective is to predict risk of adverse outcomes. Researchers will use two online, peri-operative risk assessment tools-the NSQIP (National Surgical Quality Improvement Program, a US online risk calculator) and the SORT (Surgical Outcome Risk Tool, a UK-based instrument)-to meet this long-term objective. Researchers will also compare predicted morbidity and mortality with observed events.

A patient cohort will be linked with the National Death Index to obtain mortality data at 30-days post-surgery. Researchers will compare NDI mortality data with predicted mortality to establish the accuracy of the risk assessment tools.

Findings will inform the accuracy of the NSQIP and SORT. Findings will also facilitate the detection of patients at risk of post-operative complications. Healthcare professionals can target interventions to reduce the likelihood of post-surgical mortality, and other complications.

Australian Breakthrough Cancer Study—Linkage to National Death Index and National Cancer Statistics Clearing House (EO 2016/4/301) 

Applicant: Cancer Council Victoria
Approval valid until: 31 December 2026

The Australian Breakthrough Cancer (ABC) study, an ongoing prospective investigation, aims to predict an individual's risk of cancer. The study examines the interaction between lifestyle and genomic factors, including the identification of genes involved in cancer formation.

ABC study data will be linked with the National Death Index (NDI) and Australian Cancer Database (ACD). NDI data will provide important mortality information; ACD data will identify those diagnosed with cancer.

Findings will facilitate early detection of cancer risk, targeted interventions and screening, and reduced mortality.

Balloon Aortic Valvuloplasty: Patients, procedures and outcomes before and during the transcatheter heart valve era (EO 2016/4/306) 

Applicant: Prince Charles Hospital/University of Queensland
Approval valid until: 31 December 2017

Degenerative aortic valve stenosis (AS) is the most common form of valvular heart disease. In severe cases, it has been linked to premature mortality. Corrective surgery is the standard treatment for AS. This, however, may not be suitable for 25 to 50 per cent of cases, due to multiple co-morbidities. In these instances, health professionals can utilise an alternative intervention-Balloon Aortic Valvuloplasty (BAV)-as a palliative approach. BAV can also be utilised as a pre-treatment option for transcatheter aortic valve implantation (TAVI).

A paucity of research has examined the effectiveness of BAV. This study investigates the effectiveness of BAV as a palliative procedure, and its utility as a pre-treatment option for TAVI.

A BAV patient cohort will be linked with the National Death Index.

Findings will provide much-needed information about the effectiveness of BAV as a palliative procedure for patients with inoperable aortic stenosis.

Data linkage - NDI and RPAH Diabetes Centre Database (EO 2016/4/310) 

Applicant: Diabetes Centre, Royal Prince Alfred Hospital
Approval valid until: 01 June 2017

In recent years, adult obesity rates and, in particular, those in young adults have increased significantly. Obesity has been linked to adverse health outcomes-cardiovascular disease, type II diabetes and, in severe cases, mortality. Furthermore, type II diabetes is highly prevalent among young adults.

This study aims to identify clinical risk factors for mortality among young adult type II diabetes patients. Another objective is to determine whether these risk factors differ from those associated with mortality among adult type II diabetes patients, and type I diabetes patients.

In this study, the Royal Prince Alfred Hospital Diabetes Centre, in collaboration with the University of Sydney, wish to link their database-a register of over 31,000 patients-with the National Death Index.

Findings will enhance early identification of young adults at risk of type II diabetes. Healthcare professionals can target interventions to reduce adverse health complications, and improve quality of life.

The Health Science Alliance (HSA) Biobank (EO 2016/4/313) 

Applicant: University of New South Wales
Approval valid until: 20 January 2022

The HSA Biobank, an initiative of the South Eastern Sydney Local Health District and University of New South Wales, is an ongoing collection of tumour banking and health data. Approximately 2,500 participants from all cancer types have been recruited, with ongoing recruitment. Samples and data are usually made available to third party researchers for projects with approval from an accredited Human Research Ethics Committee.

HSA Biobank data will be linked with the National Death Index. This will enable researchers to examine important questions such as the association of specific clinical and molecular features of cancer on survival. Research of this nature improves the understanding of cancer aetiology, and markers of diagnosis and treatment outcomes.

Women's Healthy Ageing Project (EO 2016/4/318) 

Applicant: University of Melbourne
Approval valid until: 01 December 2019

The Women's Healthy Ageing Project (WHAP) is a longitudinal, prospective study of the health and well-being of Australian women. The WHAP collects data about lifestyle, quality of life, social connectedness, and cognitive decline. A primary objective is to identify cardiovascular, cognitive and lifestyle risk factors for mortality. The WHAP initially followed a middle-aged cohort. These women are now aged over 70 years.

The WHAP cohort will be linked with the National Death Index to examine relationships between neurological functioning, lifestyle factors, cardiovascular disease, and mortality.

Findings will identify risk and protective factors for mortality. Healthcare professionals can utilise this information to promote healthy ageing among women.

A cardiogeriatric model of care: Prospective assessment of a new method of care for elderly patients admitted with heart failure (EO 2016/4/328) 

Applicant: Department of Cardiology, Western Health, Victoria
Approval valid until: 30 November 2017

Heart failure is a significant health concern. It is a prominent cause of mortality for children and adults and, in particular, the elderly. Western Health in Victoria, Australia established a cardio-geriatric unit to meet the health care needs of elderly heart failure patients. Within this unit, under a multidisciplinary care model, a cardiologist and geriatrician review patients' cardiovascular functioning. Patients also access additional cardiology services.

A Western Health patient cohort will be linked with the National Death Index. This will enable researchers to evaluate the effectiveness of interventions in reducing mortality among elderly heart failure patients.

Life expectancy of patients with Floppy Eyelid Syndrome (EO 2016/4/329) 

Applicant: Royal Victorian Eye and Ear Hospital
Approval valid until: 31 December 2017

Floppy Eyelid Syndrome (FES) is a rare condition resulting in sticky discharge and watering from the eye(s), droopiness of the upper eyelid(s) and, in some instances, reduced vision due to corneal damage. FES is strongly associated with Obstructive Sleep Apnoea, a debilitating condition linked to reduced life expectancy.

There are no published studies investigating life expectancy among FES patients. This study investigates premature mortality, and life expectancy, among FES patients. Data will be linked with the National Death Index.

Findings will have implications for enhancing FES patients' quality of life.

Improving joint replacement outcomes in Australia (EO 2016/4/316) 

Applicant: University of South Australia
Approval valid until: 31 December 2025

Joint replacements are one of the most common elective procedures in Australia. The Australian Orthopaedic Association (AOA) maintains the National Joint Replacement Registry (NJRR). This registry contains information about joint replacement procedures undertaken, including surgical outcomes such as revision surgery, and mortality. The AOR, through the NJRR aims, as its key objective, to identify factors that contribute to both poor and successful prognoses following joint replacement surgery.

AIHW previously linked the NJRR with the National Death Index. This linkage provided important information about deceased NJRR individuals.

As part of the current linkage, the NJRR will be linked with the Medicare Benefits Schedule and Pharmaceutical Benefits Schedule. The AOA will also access hospital data from state linkage units. Findings will enable the AOA to monitor a wider range of surgical outcomes. This will enable healthcare professionals to target interventions, enhance surgical outcomes, and reduce mortality.

Establishing high quality, integrated data for chronic disease management plans and secondary prevention medications and their effectiveness for patients after stroke: A substudy of STAND FIRM (EO 2016/4/325) 

Applicant: Monash University
Approval valid until: 31 December 2019  

Approximately 50,000 Australians suffer a stroke each year. STAND FIRM, a research initiative, was designed to assist General Practitioners to manage stroke-related risk factors, and reduce stroke prevalence. STAND FIRM has recruited 570 stroke patients, randomly allocated to receive either an individualised management plan or standard care.

The STAND FIRM cohort will be linked with the National Death Index, Medicare Benefits Schedule and Pharmaceutical Benefits Schedule to meet the following objectives:

  • Describe the uptake of chronic disease management plans within 12 and 24 months after a stroke
  • Evaluate the effectiveness of chronic disease management plans, based on health outcomes (e.g., rates of hospitalisation, and mortality)
  • Evaluate the effectiveness of secondary prevention medications

Findings will enable healthcare professionals to improve the management of stroke patients, and reduce the associated burden of disease.