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Registries

Clinical Registries at DEPM

Over the past few years there has been an enormous upsurge in interest around the establishment of clinical registries. DEPM has taken a leadership role in developing a critical mass of expertise around the establishment, management and analysis of clinical registries. The upsurge in interest has been driven by a number of factors including the need to ensure quality assurance in relation to treatments and benchmarking through to assessing the benefits of novel therapeutic agents released on the Australian market.

The following registries are managed by or associated with DEPM. Many of them are managed by the
DEPM Clinical Informatics and Data Management Centre.

ASCTS Database Project

Monash Centre of Cardiovascular Research and Education in Therapeutics

The Australian Society of Cardiothoracic Surgeons (ASCTS) National Cardiac Database Program records details of all adult cardiac surgical procedures performed in participating units across Australia.  The program publishes annual reports describing the activities and outcomes of participating units in a comparative, de-identified format. 

Currently, 18 of 25 Public Hospital Units are members of the program and four private hospitals are also participating in the registry.  Since the instigation of the project in 2001, the ASCTS web database portal contains over 35,000 records. 

ARAD database

Monash Centre of Cardiovascular Research and Education in Therapeutics

The ARAD database is an initiative of the Rheumatology Society and CCRE provides the data management for the activity. This is a Teleform based project with baseline and follow-up data for patients receiving new biological agents for the management of rheumatoid arthritis.Rachelle Buchbinder is a key collaborator on this project which incorporates hospital and private specialists across Australia.

Bosentan Patient Registry

Monash Centre of Cardiovascular Research and Education in Therapeutics

This is a unique registry established as part of a risk sharing arrangement with the Pharmaceutical Benefits Advisory Committee and the Pharmaceutical industry for the listing of medication (bosentan) on the Pharmaceutical Benefits Scheme. Outcome data from randomised trials in patient with pulmonary arterial hypertension is not available and the establishment of a registry to monitor survival outcomes in patients receiving PBS subsidised medication will enable the PBAC to evaluate current drug pricing models. It is the first registry of this type in Australiaand aims to form a model for novel drug therapy assessment by PBAC for the future

Haemostasis Registry

Pre-hospital, Emergency and Trauma Unit

The purpose of this Registry is to gain information on safety, efficacy, appropriateness of use and dosages of recombinant activated factor VII (rFVIIA, NovoSeven). Establishment of a register of users will provide valuable observational data touching on efficacy, adverse events, effective dosage and cost-effectiveness.

Melbourne Interventional Group (MIG) Inverventional Cardiology Registry

Monash Centre of Cardiovascular Research and Education in Therapeutics

The Melbourne Interventional Group (MIG) remains the only Percutaneous Coronary Intervention (PCI) Registry collecting standardised procedural and follow up data on consecutive patients across multiple sites in Victoria.  

Current enrolment sits at 13,400 PCI procedures.  Thirty day and twelve month follow up are undertaken routinely on all subjects.  Longer term outcome data is now available as linkage with National Death Index has been undertaken in 2009.

REACH Registry

Monash Centre of Cardiovascular Research and Education in Therapeutics

This study is an international prospective observational registry of subjects at increased risk of atherothrombotic events, coordinated in Australia by CCRE together with the Baker Institute. The objectives of the study are to evaluate the long-term risk (yearly event rate) of atherothrombotic events globally, as well as in different population subgroups, compare outcomes within different subject profiles and define predictors of risk for subsequent events. In separate sub studies, data collected for the Australian cohort will provide information on the prevalence of peripheral artery disease (PAD) and provide estimates on the economic cost of clinical athero-thrombosis. The study will also enhance the quality of primary and secondary cardiovascular prevention among Australian general practitioners. The enrolment phase of the study was completed in July 2004 and recruited 2877 participants across Australia and over 50,000 patients worldwide, who will be followed-up for a period of 24 months.

Melbourne Vascular Surgeons Association (MVSA) registry project

Monash Centre of Cardiovascular Research and Education in Therapeutics

In 2004, the Melbourne Vascular Surgeons’ group (MVSA) appointed the CVDPU (Baker) as its data management centre and for conducting clinical audit activities for all 13 surgical units based in Victorian public hospitals. CCRE undertakes the biostatistical analysis for this project. A series of 5 key performance indicators were used to benchmark the performance of surgical units and formed the basis of a comprehensive data analysis and reporting system. The brief includes the performance of clinical audits, data analysis and the production of individual unit and surgeon reports. Pending the successful completion of this pilot phase, it is being envisaged to expand the program to all participating hospitals in the following year.

Surveillance of workplace Based Respiratory Events (SABRE)

Monash Centre for Occupational and Environmental Health

Start up funded by the Australian Lung Foundation, now unfunded

SABRE is a surveillance scheme providing the first comprehensive data on occupational respiratory disease in Victoria and Tasmania and has links to a similar scheme in New Zealand. We have also been involved in setting up a similar scheme in NSW. Registers exist in several overseas countries, for example, the Surveillance of Work-related Occupational Respiratory Disease program (SWORD) in the UK which has been reporting data since 1989.

Victorian Cardiac Arrest Registry

Pre-hospital, Emergency and Trauma Unit

This Registry is supported by the Department of Human Services and centred at the Metropolitan Ambulance Service. The Registry captures all cardiac arrests attended by metropolitan and rural ambulance across Victoria. The Registry has over three years of data and will be important in monitoring epidemiological trends and the effectiveness of community and pre-hospital interventions.

Victoria Lung Cancer Registry

Centre of Research Excellence in Patient Safety (CRE-PS)

The Lung Cancer Registry Pilot Project was established in 2011 following a successful funding application to the Victoria Cancer Agency.  The pilot registry will focus on patients diagnosed with lung cancer in key central lung cancer care referral centres across Melbourne and includes regional metropolitan and rural centres of care.  The pilot project aims to collect data to enable the accurate description of epidemiology, assessment, diagnosis, staging, management and outcomes of lung cancer in Victoria.

Victorian Orthopaedic Trauma Registry

Pre-hospital, Emergency and Trauma Unit

This project commenced in 2003 and involves the recruitment of orthopaedic trauma patients from The Alfred and Royal Melbourne hospitals. Outcomes are measured at both discharge and six months post-injury.

VSTORM - Monitoring and Evaluation of the Victorian State Trauma System

Pre-hospital, Emergency and Trauma Unit

Victorian Trauma Foundation / Department of Human Services / DEPM

This registry was established in 2001 to capture information on all major trauma patients in Victoria. The monitoring and evaluation of the statewide system for trauma management was designed to reduce preventable death and permanent disability resulting from major trauma.