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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

NHMRC Centre of Clinical Research Excellence in Therapeutics

The Victorian Division of the Australian Society of Cardio-thoracic Surgeons appointed the Baker Institute to act as the Data Management and Analysis centre for a project aiming to identify key performance indicators for cardiac surgical outcomes. CCRE undertakes the biostatistical analysis for this project. A standard database was developed for the project, and adopted by all public hospitals performing cardiac surgery in Victoria. 2004 saw the development of risk-adjusted outcome models measuring surgical performance, which will make possible the benchmarking of surgical performance nationally and well as internationally. As a result of its demonstrated effectiveness, there is a high level of interest in the project from other centres and it is being envisaged that the program will be expanded nationally over the next few years. During 2004, one surgical group in Queenslandjoined the program and the NSW public and private hospital groups are expected to join the group in 2005.

ARAD database

NHMRC Centre of Clinical Research Excellence 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

NHMRC Centre of Clinical Research Excellence 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

NHMRC Centre of Clinical Research Excellence in Therapeutics

MIG is a collaboration of interventional cardiologists (led by Andrew Ajani) working to establish a registry for interventional cardiology procedures. Eight public and private hospitals are involved and over 500 cases have been collected within the first year of operation. Once established, the registry aims to provide a platform for a national database for cardiac procedures in Australia.

REACH Registry

NHMRC Centre of Clinical Research Excellence 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

NHMRC Centre of Clinical Research Excellence 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)

Southern Melbourne Integrated Cancer Service Registry

Unit of Occupational and Environmental Health

Funded by the Australian Lung Foundation

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.

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.