Registry SIG Presentations Archive


Presentation Presenter /
Australian Breast Device Registry (ABDR) Patient Reported Outcome Measure (PROM) Pilot Study (PDF, 2.3MB) Dr Nicole Ng – Monash University
Global Prostate Cancer Outcomes Registry – PCOR and the Delphi Project (PDF 2.9MB) Associate Professor Sue Evans – Monash University
Victorian review of safety of hospital care (PDF, 1.9MB)

Dr Stephen Duckett – GRATTAN Institute
The Victorian Cardiac Outcomes Registry: Improving clinical care in real time (PDF, 3.2MB)

Associate Professor Jeff Lefkovits – Victorian Cardiac Outcomes Registry
Do registries pay their way? – Estimating the economic impact of 5 mature registries in Australia (PDF, 1.3MB) Dr Neil Soderlund – Quantium Health Outcomes
The value of clinical quality registries is clear, where we are going from here: An update on the Commission's work (PDF, 3.0MB) Dr Robert Herkes – Australian Commission on Safety and Quality in Health Care


Presentation Presenter /
The doable, conceivable and improbable using unstructured and structured health data Federico Girosi – Western Sydney University, Capital Markets Cooperative Research Centre
The Victorian Injury Surveillance Unit (VISU) – a valuable data resource for injury research, policy and practice Janneke Berecki-Gisolf – Victorian Injury Surveillance Unit
Rise of the Sentinel Geoffrey Cloud – Alfred Health
ADHA's vision and strategy around digital health for Australia Tim Kelsey – Australian Digital Health Agency
Inclusion of the patients’ perspective in the development of  patient-reported outcome measures used in elective coronary revascularisation: A narrative review Geeske Peeters – Monash University
A scoping study for a national dementia registry in Australia Karolina Krysinska – Dementia Collaborative Research Centre, University of New South Wales
Self-controlled case-series method: An analytic approach for registry data StellaMay Gwini – Monash University
The Australian Stroke Clinical Registry: achievements and aspirations Nadine Andrew – Australian Stroke Clinical Registry (AuSCR), Monash University
The Australia and New Zealand Fontan Registry: A large bi-national collaboration in congenital heart disease

Yves d'Udekem – Royal Children's Hospital

Streamlining of ethics and site assessment in Victoria and for National Mutual Acceptance Dr Suzanne Hasthorpe – Manager, Coordinating Office for Clinical Trial Research


Presentation Presenter /
Overview of the Secure Unified Research Environment (SURE) Jo Khoo – Sax Institute
The Victorian Streamlined Review Process and the National Mutual Acceptance (NMA) Streamlined Review Processes
Australian Breast Device Registry
Angela Henjak – Alfred Health

Vanessa Fox – Australian Breast Device Registry
The Fight Retinal Blindness Registry of Outcomes of treatment of Macular Degeneration Mark Gillies – Save Sight Institute, The University of Sydney
Australia and New Zealand Neonatal Network (ANZNN) – Collaborative Network for Neonatal Care Kenneth Tan – Neonatologist, Monash Children's Hospital
An update on the Australasian Cardiac Outcomes Registry (ACOR) Lin Turnbull – CEO, Australasian Cardiac Outcomes Registry (ACOR)
Measuring complexity in the complex General Medical patient using a novel patient engagement tool: the Team And Patient Alignment score (TAPAS) Harvey Newnham – Clinical Program Director of Emergency and Acute Medicine, Director of General Medicine, Alfred Health
Connecting up our health system – eHealth Foundations and Beyond Dr Steve Hambleton – Chair, National E-Health Transition Authority (NEHTA)
The Coronary Angiogram Database of South Australia (CADOSA) Registry
* slides unavailable for website
Professor John Beltrame and Dr Rosanna Tavella, Coronary Angiogram Database of South Australia (CADOSA)


Presentation Presenter /
Spleen Registry: Victorian Spleen Service/Registry, now Spleen Australia – 11 years in the making Penny Jones – Manager, Spleen Australia
Clinical Registries and Quality Improvement, with case studies from cystic fibrosis Geoff Sims – Manager,
Australian Cystic Fibrosis Data Registry
The Australian Stroke Clinical Registry: progress and future plans Brenda Grabsch – Manager, Australian Stroke Clinical Registry (AuSCR)
Improving health outcomes: the Victorian Cardiac Outcomes Registry (VCOR) Jeff Lefkovits – Clinical Lead, Victorian Cardiac Outcomes Registry (VCOR)
APCCR – Australian Prostate Cancer Clinical Registry A/Prof Sue Evans – Registry Custodian, The Australian Prostate Cancer Clinical Registry (APCCR)
ANZSCTS National Cardiac Surgery Database Program Lavinia Tran – Manager, ANZSCTS (Australia and New Zealand Society of Cardiac and Thoracic Surgeons) National Cardiac Surgery Database Program
Evaluating vaccine effectiveness using registry data: an example of data linkage between the Victorian Cervical Cytology Registry and the National HPV Vaccination Register A/Prof Dorota Gertig – Medical Director, Victorian Cervical Cytology Registry
Opt out consent: the new frontier Ian Olver AM – CEO, Cancer Council Australia


Presentation Presenter /
Ethics approval of National Death Index linkages Gary Kent – Head, Governance Unit, Australian Institute of Health and Welfare (AIHW)
Australasian Rehabilitation Outcomes Centre – Establishing and Maintaining a National Clinical Registry Frances Simmonds – Director, Australasian Rehabilitation Outcomes Centre (AROC)
The challenges in choosing an IT platform for a registry – Lessons from AROC, PCOC and ePPOC Dave Webster – Senior Research Fellow, Australian Health Services Research Institute
The Aus-ROC Out-of-Hospital Cardiac Arrest 'Epistry' – the process and challenges in the establishment of the Epistry so far Janet Bray – Research Fellow, Australian Resuscitation Outcomes Consortium (Aus-ROC)
AusTQIP incorporating the Australian Trauma Registry – Challenges and Achievements for National Collaboration and Data Sharing Meng Tuck Mok – Manager, Australian Trauma Registry (ATR) and Nathan Farrow – Manager, Australian Trauma Quality Improvement Program (AusTQIP)
The Mobile Registry – using smartphones to transform prospective data collection Dr Hugo Stephenson – international expert in observational studies and clinical registries
Funding for Clinical Quality Registries – Cardiac Registry examples

Funding Models for Clinical Registries
Prof Christopher Reid – Chief Investigator, Victorian Cardiac Outcomes Registry (VCOR)

Sue Huckson – Manager, Australian and New Zealand Intensive Care Society Centre for Outcome and Resource Evaluation (ANZICS CORE)
Compensation Research Database: using administrative claims data on compensated injuries Rasa Ruseckaite – Compensation Research Database Team Leader, Institute for Safety, Compensation and Recovery Research (ISCRR)
Increasing capacity to share registry data David Groenewegen
Director, Research Infrastructure, Monash University Library


Presentation Presenter /
Victorian Ambulance Cardiac Arrest Registry
* slides unavailable for website
Marijana Lovic – Senior Research Fellow, Victorian Ambulance Cardiac Arrest Registry (VACAR)
The contribution of clinical outcomes registries globally Neil Soderlund – Partner and Managing Director, Boston Consulting Group (BCG)
Phil Barker – Associate Consultant, Boston Consulting Group (BCG)
An Australian Radiation Oncology Register Pilot: Development and Future Use Mel Grand – Special Projects Manager, TROG
Tomas Kron – Principal Research Physicist, Peter MacCallum Cancer Centre
Pilot of a Population-Based Prostate Cancer Registry – an update A/Prof Sue Evans – Registry Custodian, Victorian Prostate Cancer Registry
PERFECT Stroke – the Finnish National Stroke Registry Atte Meretoja – Neurologist, Finnish National Stroke Registry, Helsinki University Central Hospital
Australian Stroke Clinical Registry (AuSCR) – an update Brenda Grabsch – Senior Project Manager, Australian Stroke Clinical Registry (AuSCR)
Out-of-hospital cardiac arrest registry ('Epistry') Prof Judith Finn – Director, Australian Resuscitation Outcomes Consortium (Aus-ROC)
Presenting data

The use of measurement in quality improvement

Appended documents: NHHRC Indicators and VQC Guide to Using Data

A/Prof Sue Evans – Associate Director

Damien Jolley – Senior Biostatistician

Centre of Research Excellence in Patient Safety (CREPS), Monash University
Developing national arrangements for clinical quality registries Nick Wilcox – Clinical Quality Registries Project, Australian Commission on Safety and Quality in Health Care (ACSQHC)
Bi-National Burns Registry – 2 years on Natalie Picton – Project Coordinator, Bi-National Burns Registry


Presentation Presenter /
Colorectal Cancer Registry Paul McMurrick – Head, Department of Surgery, Cabrini Monash University
Consent and ethical issues facing clinical registries: the Australian Ethics Committee perspective Sandra Hacker – Chair, Australian Health Ethics Committee of the National Health and Medical Research Council (NHMRC)
Data governance – the conflict between health processes and information Robert Hillard – Partner, Deloitte Australia
Data development activity in health Mel Taylor – Leader of the Metadata Information Services Unit, Australian Institute of Health and Welfare (AIHW)
ANZTADC anaesthetic incident reporting system Martin Culwick – Medical Director, Australian and New Zealand Tripartite Anaesthetic Data Committee (ANZTADC)

Establishing a new clinical quality registry: the lung cancer registry experience

Sue Evans – Registry Custodian, Victorian Lung Cancer Registry
What to do with missing data in clinical registry analysis Rory Wolfe – Biostatistician, Monash University
Haemostasis Registry – data auditing Louise Phillips – Head, Transfusion Research Unit
Statewide  surveillance program for healthcare associated infections Ann Bull – Victorian Hospital Acquired Infection Surveillance System (VICNISS) Registry
Economic appraisal in health care Anthony Harris – Deputy Director, Centre for Health Economics, Monash University


Presentation Presenter /
IT solutions and the Australian Motor Neuron Disease Registry
* slides unavailable for website
Paul Talman – Chairperson of the Steering Committee, Australian Motor Neuron Disease Registry (AMNDR)

Charlie Corke – Director of Intensive Care, Repatriation Hospital, Melbourne
Problems, Pitfalls and Possible Successes in obtaining Medicare Data Maree Williams – Biostatistician
Margaret Staples – Project Coordinator

Australian Rheumatology Association Database (ARAD)
Achieving Sustainable Funding Heather Wellington – Consultant, DLA Phillips Fox Health Law Practice
Australian Stroke Clinical Registry Dominique Cadilhac – Head, Public Health, National Stroke Research Institute
MSBase Registry: a multiple sclerosis registry Helmut Butzkueven – Neurologist, Royal Melbourne Hospital
Pilot of a prostate cancer clinical quality registry: challenges and milestones Sue Evans – Associate Director, CREPS, Monash University
Registry guidelines for Institutional Ethics Committees John McNeil – Head, School of Public Health and Preventive Medicine

Sue Evans – Associate Director, CREPS, Monash University


Presentation Presenter /
The impact of ehealth on clinical registries: what does the future hold? Karen Gibson – National E-Health Transition Authority (NEHTA)
Long term patient outcomes data: VSTORM Belinda Gabbe – Principal Investigator, Victorian State Trauma Registry (VSTORM)
ANZICS Outcomes Audit and Research Graeme Hart – Director, ANZICS Research Centre for Critical Care Research
What is the role of ICNARC? Kathy Rowan – Director, Intensive Care National Audit and Research Centre (ICNARC) (UK)
Cardiac procedures registry
* slides unavailable for website
Christopher Reid – Associate Director

Carl Costolloe – Senior Research Fellow
Kate Evans

Centre of Cardiovascular Research and Education (CCRE) in Therapeutics 
The registry of registries: evaluating attributes of Australian clinical registries Sue Evans – Associate Director, CREPS, Monash University
Legal issues relating to the establishment and management of clinical registries
* no slides used
Bob Milstein – Medicolegal Lawyer, Corrs Chambers Westgarth
Live data feeds and use of HL7 in Clinical Cancer Registries: lessons in how to receive data quickly and in a standardised format Neville Board – Information Strategy Manager, Australian Commission on Safety and Quality in Health Care (ACSQHC)
Neil Heron – Cancer Information Manager, Northern Sydney Central Coast Area Health Service (NSCCAHS)
ANZDATA: a recipe for how it works Stephen McDonald – Convenor, Australia and New Zealand Dialysis and Transplant Registry (ANZDATA)


Presentation Presenter /
AOA – National Joint Replacement Registry – Does it result in a change of practice? Richard de Steiger – Deputy Director, Australian Orthopaedic Association (AOA), National Joint Replacement Registry
ANZICS: Presenting data David Cook – Intensivist, Princess Alexandra Hospital Queensland
The evolution and utility of a national stroke registry: the Swedish experience Thomas Linden – Visiting Research Fellow, National Stroke Research Institute, Gothenburg (Sweden)
How to run a successful registry: lessons from the USRDS Allan J Collins – Director, United States Renal Data Services (USRDS)
Record Linkage at the Department of Human Services, Past and Future Vijaya Sundararajan – Senior Medical Advisor, Funding Health Information Policy, Department of Human Services (DHS)
BioGrid Australia: linking data Henry Gasko – Life Sciences Coordinator, Bio Grid Australia
Registry Operating Standards Sue Evans – Associate Director

Peter Cameron – Director

CREPS, Monash University
The use of web data management systems for registries Andrew Hannaford – Information Systems Manager, Clinical Data Management Centre, Monash University
Privacy issues
* slides unavailable for website
Brad Crammond – Monash University
Australian Clinical Quality Registries Update Niall Johnson – Australian Commission on Safety and Quality in Health Care (ACSQHC)


Presentation Presenter /
Victorian Spleen Registry Penny Jones – Manager, Victorian Spleen Registry
* slides unavailable for website
Rowan Walker – Australia and New Zealand Dialysis and Transplant Registry (ANZDATA)
VSTORM: progressing to population-based monitoring of long term outcomes Belinda Gabbe – Principal Investigator, Victorian State Trauma System (VSTORM)
Haemostasis Registry Louise Phillips – Head, Transfusion Research Unit