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Applicant: University of QueenslandApproval valid until 21 January 2015
The aims of this project are to analyse the characteristics of patients admitted to intensive care, measure mortality, and analyse the personal, health services and technological factors affecting survival rates of these patients from 2002 until present, and annually for the next five years. A particular aim is to develop a model of risk over time for cardiac surgery patients and to investigate whether team case volume has an effect on this risk. The researchers wish to link the ICU cohort with the National Death Index to establish fact and date of death for use in survival analysis.
Applicant: University of MelbourneApproval valid until 31 December 2013
The Passports study involved interviews with 1,325 adult prisoners in Queensland in the weeks prior to their release, and again 1, 3 and 6 months post-release. The study involves linking interview data with recidivism and health service utilisation data covering the first two years post-release. Linkage with the National Death Index will be undertaken to identify deaths within 2 years of release.
The aims of the study are to analyse the incidence, timing and causes of death in a representative cohort of adult prisoners/ex-prisoners, and thus to identify health-related predictors of mortality, in order to make evidence-based recommendations for the prevention of mortality in recently released prisoners. Previous record linkage studies have shown that ex-prisoners are at increased risk of death, however limitations of routinely collected data mean that these studies have had limited capacity to identify risk factors for death, which could inform preventive interventions.
Applicant: Department of Surgery, Deakin University and Geelong HospitalApproval valid until 31 December 2014
The purpose of this study is to determine the short and long term survival after resectional surgery for colorectal cancer in patients over eighty years of age at Geelong Hospital (Victoria) compared with younger patients, and to compare these with the Australian standard population. Approximately 20% of patients undergoing surgery for colorectal cancer are over the age of eighty years, and the shorter life expectancy of these patients and their higher rate of associated comorbidities means that their treatment is often different from younger patients. The long term outcomes of older patients have been poorly studied both locally and internationally. A further aim is to assess the utility of post-operative surveillance. This may help to make better decisions about whether such elderly patients need to be subjected to expensive, invasive and potentially harmful surveillance post-surgery for bowel cancer.
Linkage to the National Death Index will be undertaken to obtain fact, date and cause of death to determine the survival rates due to cancer and other causes.
Applicant: Orygen Youth Health Centre and Centre for Youth Mental Health, Melbourne UniversityApproval valid until 1 May 2018
The effects of psychosis can be debilitating and have long and short term implications on the lives of suffers. The Early Psychosis Prevention and Intervention Centre (EPPIC), as part of the Orygen Youth Health Clinical Program (OYHCP), demonstrated the immediate benefits that come from providing specialist early intervention (SEI) to young people experiencing their first episode of psychosis. The researchers believe that investigating longer term impacts of SEI, such as mortality, physical health, neuro-cognition and vocational status, are integral to the implementation of future clinical and best practice guidelines.
This study is aimed at investigating the mortality of the First Episode Psychosis Outcome Study (FEPOS) cohort as part of a wider project designed to examine the 15 year outcomes of participants who were treated for a first episode of psychosis at the EPPIC between 1998 and 2000. Linkage to the National Death Index will be undertaken to determine fact, date and all causes of death.
The results of this study will be used to establish mortality rates for the FEPOS cohort 15 years after first episode and, more specifically, rates of natural versus unnatural (ie. suicide) cause, timing of death in relation to treatment, and the impact a range of individual morbidity characteristics had on mortality over time. Such analyses are important in the establishment of outcome and clinical performance measures.
Applicant: University of QueenslandApproval Valid until 31 December 2016
The Australian Longitudinal Study on Women's Health (ALSWH) - widely known as Women's Health Australia - is a longitudinal population-based survey, funded by the Australian Government Department of Health and Ageing. The Project began in 1996 and examines the health of over 40,000 Australian women. The ALSWH involves three large, nationally representative, cohorts of Australian women representing three generations (born 1973-78, 1946-51 and 1921-26). The Study was designed to explore factors that influence health among women who are broadly representative of the entire Australian population. Women were randomly selected from the Medicare Australia database and invited to participate in the longitudinal study. After Survey 1 in 1996, the three age cohorts have been surveyed sequentially, one cohort per year, on a rolling basis since 1998.
The Project provides a resource to examine associations over time between aspects of women's lives and their physical and emotional health. It provides an evidence base to Department of Health and Aging - as well as other Australian and State/Territory Departments - for the development and evaluation of policy and practice in many areas of service delivery that affect women.
The AIHW will act in its role as an Integrating Authority, and link the ALSWH 1921-1926 birth cohort to a number of aged care-related Commonwealth datasets: Aged Care Funding Instrument, Resident Classification System, Community Aged Care Program, Extended Care at Home Program, Extended Care at Home - Dementia Program, Home and Community Care, and Aged Care Assessment Program. The resulting data will provide a unique and nationally representative resource for evaluating the current health and psychological policy for women in this older age group, and potentially lead to the implementation of changes that will improve health care services for this population
Applicant: Australian Institute of Health and WelfareApproval valid until 31 December 2014
The AIHW has been commissioned by the Standing Council on Community and Disability Services Advisory Council (SCCDSAC) to link and analyse the Disability Services National Minimum Data Set (DS NMDS) 2010-2011 and the Home and Community Care National Minimum Data Set (HACC NMDS 2010-2011. The main objectives of this project are to further the knowledge, experience and capability to conduct data linkage across community service administrative collections and to analyse the characteristics of clients who are common to the Disability Services and the Home and Community Care programs in the same time period. The outcomes are intended to provide valuable information for the development and monitoring of service needs that cross these service programs.
Applicant: BioGrid Australia, Royal Melbourne HospitalApproval valid until 3 December 2014
Cancer is a common cause of morbidity and mortality in Australia. Chemotherapy is regularly used for the treatment of a wide variety of cancers with varying success. Palliative chemotherapy is often administered to extend and/or improve the quality of life of patients with advanced stages of cancer in Australia. However, currently there are no Australian data on the impact of palliative chemotherapy on patients. The current study aims to assess the frequency of palliative chemotherapy and its impact on quality of life, and to establish whether cancer type and any patient factors such as age, gender and socio-economic status impact on this and mortality rates. Results of this study will enable clinicians to make informed decisions about the use of palliative chemotherapy for individual patients.
Linkage will be undertaken with the National Death Index to determine fact, date and all causes of death.
Applicant: The Kirby Institute, University of NSWApproval valid until 1 June 2014
The Australian HIV Observational Database (AHOD) is an ongoing prospective cohort study. Since its inception in 1999, the AHOD has been used to monitor the treatment and outcomes of HIV, including the pattern of anti-retroviral treatment use among different demographic groups, and HIV and non-HIV related causes of death. An important step in progressing this study is to establish measures of mortality that can ultimately be used to assess the impact of HIV-positive status on chronic disease management and health promotion.
Linkage will be undertaken with the National Death Index to determine fact and date of death.
Applicant: The Institute of Endocrinology and Diabetes, The Children's Hospital at WestmeadApproval valid until 1 July 2016
Type 1 diabetes has a significant impact on health and is linked to increased rates of mortality. However, specific factors which lead to increased mortality amongst sufferers are often still unclear. The study will examine the impact of autonomic nerve functioning and microvascular complications on death rates amongst type 1 diabetes sufferers. The results of could potentially be used to inform risk factor modification amongst the at risk population.
Applicant: Stroke Division, Florey Institute of Neuroscience and Mental HealthApproval valid until 1 July 2017
The Australian Stroke Clinical Registry (AuSCR) is a national, clinical quality registry of patients admitted to hospital with acute stroke or transient ischaemic attack. The registry represents a collaborative effort to monitor, promote and improve the quality of acute stroke care. It is an ongoing registry with its own governance underwritten by the Florey Institute of Neuroscience and Mental Health (affiliated with the University of Melbourne). Data collection for AuSCR commenced in 2009.
Linkage will be undertaken with AuSCR data with the National Death Index to obtain the fact, date and all causes of death, and will be repeated annually for five years.
Applicant: Cardiology Department, Concord Repatriation General HospitalApproval valid until 21 April 2018
The Snapshot Acute Coronary Syndrome (ACS) audit involved the collection of detailed information about consecutive patients (4,296) admitted to 463 public and private hospitals in Australia and New Zealand from 14-27 May, 2012. The aims of the study are:
Linkage will be undertaken with the National Death Index to obtain fact and date of death, and all causes of death and will be repeated annually for 5 years.
Applicant: Research Development and Co-ordination Section, Research Development Branch, Department of Veteran's AffairsApproval valid until 31 December 2014
This is a longitudinal follow-up study as part of phase two of the larger Study of Health Outcomes in Aircraft Maintenance Personnel (SHOAMP). The SHOAMP followed a 2001 Royal Australian Air Force Board of Inquiry following concerns that personnel had increased health risks due to exposure to chemicals used in spray sealing of F-111 fuel tanks in 1999. This project will enable the Department of Veterans' Affairs to ascertain the extent of cancer and mortality in this group of RAAF/Civilian personnel and to develop appropriate policy responses.
The fourth MCIS intends to ascertain if there is a higher rate of death and cancer in F-111 fuel tank maintenance personnel compared to other aircraft technical trades, non-technical personnel on the same airbase and the age matched standardised Australian population. This study is a continuation of three previous Mortality and Cancer Incidence studies which make up phase two of the Study of Health Outcomes in Aircraft Maintenance Personnel (SHOAMP). The fourth MCIS will include an additional group of Tier Classified F-111 fuel tank maintenance personnel.
Linkage will be undertaken with the National Death Index to obtain fact, date and all causes of death and with the ACD to obtain cancer diagnosis and associated information.
Applicant: BioGrid AustraliaApproval valid until 30 November 2014
Internationally, the incidence of type 1 diabetes mellitus is rising. While children diagnosed with Type 1 diabetes mellitus (T1DM) in the 21st century can grow and develop normally, they remain at risk of complications associated with long-standing hyperglycaemia and apparently higher mortality. This study aims to describe the clinical course in terms of glycaemic trajectories, as well as complication and mortality rates in an Australian cohort of adults diagnosed with T1DM during childhood who have transitioned from paediatric services at The Royal Children's Hospital (RCH) to adult services at the Royal Melbourne Hospital (RMH).
The aim of the study is to document the clinical outcomes and mortality rates for adults who were treated for T1DM at the RCH in childhood and who were transitioned from to adult services at RMH. Comprehensive T1DM data collections will be undertaken, from established T1DM databases at these two hospitals, accessed via BioGrid Australia.
Linkage will be undertaken with these datasets with the National Death Index to obtain fact, date and cause of death. This will enable analysis of mortality rates in individuals diagnosed with T1DM in childhood. The relationship between age at diagnosis/time since diagnosis and each of glycaemic control, onset of diabetes-related complications (including cardiovascular and cerebrovascular disease) and mortality will also be analysed.
Applicant: St Vincents HospitalApproval valid until 31 December 2020
Inflammatory bowel disease (IBD) is a chronic disease group, including Crohn's disease and Ulcerative Colitis that affects about 78,000 Australians, predominantly between the ages of 15 and 40. IBD has a broad spectrum of disease manifestation, from mild to severe and debilitating. This project, which commenced in 2007, is the first population-based natural history study of patients diagnosed with IBD in Australia. It aims to increase the understanding of the real life progress of IBD, help with management of these patients in the future, and assess the health costs associated with this chronic disease. It involves examining health care outcomes, care after diagnosis including surgery, hospitalisation, GP and specialist visits, and medication use.
The aims of the follow up are to analyse disease severity and cost by frequency of Medicare funded specialist reviews to IBD affiliated doctors (e.g. gastroenterologists, surgeons and paediatricians, from the Medicare Benefits Scheme), and to assess disease severity and progress by assessing use of the various groups of IBD specific medications (from the Pharmaceutical Benefits Scheme).
Data linkage will be undertaken with the Pharmaceutical Benefits Scheme and Medical Benefits Scheme and the National Death Index to determine fact and all causes of death.
Applicant: Monash UniversityApproval valid until 1 October 2020
Percutaneous revascularisation (also known as percutaneous coronary intervention or angioplasty) is a non-surgical procedure used to treat the stenotic (narrowed) coronary arteries of the heart found in coronary heart disease. The Melbourne Interventional Group (MIG) Registry was established in 2004 to develop a systematic interventional cardiology database that would provide valid and reliable longitudinal clinical data of patients undergoing percutaneous revascularisation in Victoria. The MIG Registry is located in the Department of Epidemiology and Preventive Medicine at Monash University and now contains over 20,000 percutaneous coronary intervention (PCI) cases. It actively collects follow-up outcome data on these patients at 30 days and 12 months post procedure. The data enables evidence based research on patient outcomes with the aim of providing better care and improving outcomes for patients.
Repeat linkages with the National Death Index will be undertaken on a two yearly basis, to determine fact and date of death, all causes of death, and State/Territory in which death occurred.
Applicant: Royal Prince Alfred HospitalApproval valid until 1 April 2017
Congenital and inherited heart diseases are common in Australia but their causes are poorly understood. The NSW Adult Congenital Heart Disease (ACHD) database project commenced in 2010 with the support from the National Heart Foundation NSW Cardiovascular Research network, and is housed at Royal Prince Alfred Hospital (RPAH). It represents the largest group of congenital heart disease patients in Australia. The main aim is to create a comprehensive longitudinal database of this patient group to allow clinicians and researchers to gain a better understanding of the characteristics of this cohort, which will potentially have benefits for these patients in the future. The database provides for an examination of trends in the incidence and prevalence of conditions, treatments, operative techniques and general clinical management, ultimately improving future treatment for congenital heart disease patients.
The specific aim of the current study is the analysis of survival for different diagnosis and treatment groups by various factors, including the existence of other conditions. Linkage of the ACHD database of approximately 5,000 records with the National Death Index (NDI) to determine fact, date and all causes of death, and state of registration will be undertaken until the end of the study in 2017.
Applicant: Queensland Institute of Medical ResearchApproval valid until 31 December 2020
The Australian National Endometrial Cancer Study (ANECS) is a national population-based case-control study that recruited women with endometrial cancer in all six states between 2005 and 2007. The ANECS database contains information on genetic and environmental risk factors, tumour characteristics and clinical follow-up data.
The aim of this phase of the study is to conduct a longitudinal follow-up of the ANECS cases (about 1500), including mortality outcomes. Survival analyses will be conducted to examine the effect of various genetic, molecular and environmental factors, and treatments. The current literature examining the effect of potential prognostic factors for endometrial cancer is relatively limited, and the ANECS study may lead to improved patient outcomes through the identification of modifiable factors.
Linkage with the ANECS cohort to the National Death Index will be undertaken to obtain date of death and all causes of death, and state and year of registration.
Applicant: Australian Institute of Health and WelfareApproval valid until 31 December 2020
The aim of this project is to examine links between people who receive housing assistance (primarily Public Housing (PH), and State Owned and Managed Indigenous Houising (SOMIH)) and specialist homelessness services.
Linkage with NSW and WA housing data with AIHW homelessness data will be undertaken and this will enable the development of a picture of people who access both housing and homelessness support services, and their patterns of service usage.
Applicant: University of New South WalesApproval valid until 31 December 2023
The incidence rates of AIDS defining illnesses continue to decrease due to vastly improved HIV treatment. Increasing survival of people with HIV means that cancer, including AIDS defining cancer and other HIV-related cancer, is one of the most important issues as the population of people with HIV increases and ages. This study aims to follow up through data linkage people on the National HIV/AIDS Registry to determine the incidence of various types of cancer. The study cohort will include all adults (aged 16-80 years) diagnosed with HIV-infection in Australia between 1982 and 2012 as notified to the Australian National HIV/AIDS Registries.
Cancer incidence will be calculated for each type of cancer across five time periods broadly representative of combination therapy availability and advances in Australia, 1982-1995 (pre-highly active antiretroviral therapy or HAART), 1996-1999, 2000-2004, 2005-2007, and 2008-2012. These will be compared with cancer incidence in the general population. This will enable analysis of the impact of HIV treatment on cancer risk over time to determine risk factors for AIDS defining cancers and other HIV-related cancers, and so identify areas of emerging clinical and public health needs in the Australian HIV population for cancer prevention and early diagnosis. It will also inform the debate regarding the risks and benefits of commencing HAART at HIV diagnosis.
Linkage will be undertaken with the National HIV/AIDS Registry to the Australian Cancer Database to obtain cancer diagnosis items; and to the National Death Index to obtain date of death, all causes of death and state/territory of registration.
Applicant: Burnet InstituteApproval valid until 31 December 2019
The Melbourne Injecting Drug User Cohort Study (MIX) is the largest cohort of people who inject drugs (PWID) ever established in Australia. The cohort is comprised of 688 young (aged 18-30 years) PWID who were recruited with their consent during 2008-2009 with a view to long term follow-up. The primary information collected in MIX includes data on injecting drug use behaviours, drug market access patterns and health service utilisation. Blood samples have been collected from first follow-up onwards for serological testing to determine blood borne virus status. Participants are followed up annually (or more frequently depending on hepatitis C status) at which time modified versions of the baseline questionnaire are administered to determine changes in behaviours and outcomes over time.
In its role as an Integrating Authority, AIHW will undertake the linkage of the MIX study with Medicare Benefits Scheme (MBS) and Pharmaceutical Benefits Scheme (PBS) data. This linkage will allow for an examination of cohort members' use of primary care services and key pharmaceuticals over time. Such information has never been collected in the Australian context, and is important in understanding the relationship between health services utilisation and outcomes such as cessation of drug use. This in turn can inform the development of prevention and service responses designed to ameliorate the burden of injecting drug use.
Applicant: University of SydneyApproval valid until 31 December 2020
The study is a randomised controlled trial evaluating psycho-education intervention for melanoma survivors. It also aims to assess the cost-effectiveness of supportive health care services for melanoma patients. The study will target 192 patients aged over 18 years, who had a previous melanoma diagnosed at AJCC stages I or II, attending one of the four melanoma high risk clinics in New South Wales (NSW).
The study has two objectives:
Linkage between the study cohort to the Medicare Benefits Schedule (MBS) and the Pharmaceutical Benefits Scheme (PBS) databases will be undertaken to obtain data about health resources and medications used during the study period. The study questionnaire will also be collecting health service resources used. Linkage to the MBS and PBS databases will only be requested for individuals who have given informed consent to participate in the study.
Applicant: University of SydneyApproval valid until 31 December 2022
This study is an inception cohort study following up people injured as a result of a land transport accident. The project aims to understand the factors associated with social and health outcomes after such an injury, including the compensation and legal processes and the health service experience. Data Linkage between study cohort to Medicare and Pharmaceutical Benefits Scheme (PBS) databases will be undertaken for a year before the injury and two years after the injury. The results will help analyse the frequency, cost and effectiveness of treatments. Results will also guide evidence based reforms in the compulsory third party insurance scheme in New South Wales (NSW).
Participation in the study is voluntary and does not influence injury treatment.
Applicant: University ofNew South WalesApproval valid until 31 December 2020
In this study, the fraction of different cancers attributable to modifiable lifestyle-related risk factors in Australia, will be studied and compared by applying the recently published Population Attributable Fraction (PAF) measure and program to data from five established large-scale Australian cohort studies. These cohort studies will be linked to the Australian Cancer Database (ACD) and National Death Index (NDI), and the relative risks (RR) between lifestyle-related risk factors and the four most common cancers (prostate, breast, colorectal, lung), accounting for the competing risk of death, will be estimated. The population-level prevalence of the risk factors will be estimated from the National Health Survey (NHS).
Applicant: University of SydneyApproval valid until 31 December 2015
This study is phase 1 in a 5 phase collaborative project funded by NHMRC to assess the sustainability of, and community engagement with, tissue banks. The project will provide evidence to inform policy and regulatory direction around tissue banking in Australia. The aim in this phase of the study is for the Australasian Leukaemia and Lymphoma (ALLG) Tissue Bank to identify living donors in order to send them a letter of invitation and questionnaire to collect their views on ethical concerns in tissue banking. These donors have previously consented to participate in future studies, including survey studies.
Linkage with the National Death Index will be undertaken for the purpose of updating the accuracy of the ALLG tissue donor database to identify deceased tissue donors ensuing only living tissue bank donor patients are invited to participate in the study.
Applicant: University of Western AustraliaApproval valid until 31 December 2014
This project is an extension of a 1997 study, which linked the Western Australian (WA) Cerebral Palsy (CP) Register to the National Death Index to establish duration of life by clinical characteristics and a cause of death profile. The results suggested the mortality rates of individuals with severe disability decrease significantly after the age of 20 years. However, the study could provide little information about the continued life expectancy for subjects with severe CP who had survived their teenage years.
The aim of this project is to provide more accurate CP lifespan information to assist in the assessment of care provisions required over a lifespan. These provisions assist in the daily lives of CP subjects and are administered by their families with the assistance of the National Disability Insurance Scheme. It is proposed to extend the original linkage to include all WA CP registered births to 2010 (approximately 3,100 people).
Linkage between the WA CP records and the National Death Index (NDI) will be undertaken to determine date of death and all causes of death.
Applicant: University of MelbourneApproval valid until 31 December 2020
Chronic artery disease is a leading cause of death in Australia. This study assesses the role of novel biomarkers in predicting adverse events in subjects presenting with acute coronary syndromes. It aims to assess blood and urine markers within the circulation of the heart and the body to test if they are elevated in patients with heart disease. Serum levels of the angiotensin converting enzyme (ACE) 2 and the receptor for advanced glycation end products (RAGE) have been measured in subjects presenting with stable and unstable acute coronary syndromes. Researchers are seeking to assess the relationship between these circulating biomarkers and subsequent cardiovascular outcomes. This study may potentially identify new treatment targets for coronary artery disease including the development of screening tests, which would help identify patients at highest risk of adverse outcomes following acute coronary syndromes.
Linkage will be undertaken between records for study patients with the National Death Index (NDI) to determine fact and date of death and all causes of death.