Registry SIG Presentations Archive

2016

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

Yves d'Udekem – Royal Children's Hospital

Australia and New Zealand Fontan Registry Bi-National Cardiac
Streamlining of ethics and site assessment in Victoria and for National Mutual Acceptance Dr Suzanne Hasthorpe – Manager, Coordinating Office for Clinical Trial Research Victorian / Commonwealth Government National Ethics

2015

Presentation Title Presenter /
Organisation
Affiliated Registry /
Organisation
RegionTheme
Overview of the Secure Unified Research Environment (SURE) Jo Khoo – Sax Institute Sax Institute National Data
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

Alfred Health

Australian Breast Device Registry

VIC
National

Streamlined ethics
The Fight Retinal Blindness Registry of Outcomes of treatment of Macular Degeneration Mark Gillies – The University of Sydney Save Sight Institute NSW Retinal blindness
Australia and New Zealand Neonatal Network (ANZNN) – Collaborative Network for Neonatal Care Kenneth Tan – Neonatologist, Monash Children's Hospital Australia and New Zealand Neonatal Network (ANZNN) VIC Neonatal
An update on the Australasian Cardiac Outcomes Registry (ACOR) Lin Turnbull – CEO, ACOR Australasian Cardiac Outcomes Registry (ACOR) National Cardiac Outcomes
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 Alfred Health Alfred General Medical Tool
Connecting up our health system – eHealth Foundations and Beyond

>> WATCH VIDEO RECORDING
Dr Steve Hambleton – Chair, NEHTA National E-Health Transition Authority (NEHTA) SA Registry Operation eHealth
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) SA Cardiac

2014

Presentation Title Presenter /
Organisation
Affiliated Registry /
Organisation
RegionTheme
Spleen Registry: Victorian Spleen Service/Registry, now Spleen Australia – 11 years in the making Penny Jones – Manager, Spleen Australia Spleen Australia National Spleen
Clinical Registries and Quality Improvement, with case studies from cystic fibrosis Geoff Sims – Manager,
Australian Cystic Fibrosis Data Registry
Australian Cystic Fibrosis Data Registry National Registry Operation
The Australian Stroke Clinical Registry: progress and future plans Brenda Grabsch – Manager, AuSCR Australian Stroke Clinical Registry (AuSCR) National Stroke
Improving health outcomes: the Victorian Cardiac Outcomes Registry (VCOR) Jeff Lefkovits – Clinical Lead, VCOR Victorian Cardiac Outcomes Registry (VCOR) VIC Cardiac
APCCR – Australian Prostate Cancer Clinical Registry A/Prof Sue Evans – Registry Custodian, APCCR The Australian Prostate Cancer Clinical Registry (APCCR) National Prostate
ANZSCTS National Cardiac Surgery Database Program

>> WATCH VIDEO RECORDING
Lavinia Tran – Manager, ANZSCTS (Australia and New Zealand Society of Cardiac and Thoracic Surgeons) National Cardiac Surgery Database Program ANZSCTS National Cardiac Surgery Registry National Cardiac
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 Victorian Cervical Cytology Registry
 
National HPV Vaccination Register
VIC
National
Cervical Cytology Registry Operation Data Linkage
Opt out consent: the new frontier Ian Olver AM – CEO, Cancer Council Australia Cancer Council Australia National Registry Operation Opt Out Consent

2013

Presentation Title Presenter /
Organisation
Affiliated Registry /
Organisation
RegionTheme
Ethics approval of National Death Index linkages Gary Kent – Head, Governance Unit, AIHW Australian Institute of Health and Welfare (AIHW) National Registry Operation Death Index Linkages
Australasian Rehabilitation Outcomes Centre – Establishing and Maintaining a National Clinical Registry Frances Simmonds – Director, AROC Australasian Rehabilitation Outcomes Centre (AROC) National Clinical Rehabilitation
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 Australasian Rehabilitation Outcomes Centre (AROC) National Clinical Rehabilitation Registry Operation eHealth
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, Aus-ROC Australian Resuscitation Outcomes Consortium (Aus-ROC) National Resuscitation Cardiac
AusTQIP incorporating the Australian Trauma Registry – Challenges and Achievements for National Collaboration and Data Sharing Meng Tuck Mok – Manager, ATR and Nathan Farrow – Manager, AusTQIP Australian Trauma Quality Improvement Program (AusTQIP)
Australian Trauma Registry (ATR)
National Trauma Registry Operation Data Sharing
The Mobile Registry – using smartphones to transform prospective data collection

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Dr Hugo Stephenson – international expert in observational studies and clinical registries   National Smart phone
Funding for Clinical Quality Registries – Cardiac Registry examples

Funding Models for Clinical Registries 
 
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Prof Christopher Reid – Chief Investigator, VCOR

Sue Huckson – Manager, ANZICS CORE
Victorian Cardiac Outcomes Registry (VCOR) Australian and New Zealand Intensive Care Society Centre for Outcome and Resource Evaluation (ANZICS CORE) VIC
National
Cardiac Intensive Care Registry Operation Funding models
Compensation Research Database: using administrative claims data on compensated injuries

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Rasa Ruseckaite – Compensation Research Database Team Leader, Institute for Safety, Compensation and Recovery Research (ISCRR) The Compensation Research Database VIC Compensation Injuries
Increasing capacity to share registry data

>> WATCH VIDEO RECORDING
David Groenewegen
Director, Research Infrastructure, Monash University Library
Monash University VIC Registry Operation Data

2012

Presentation Title Presenter /
Organisation
Affiliated Registry /
Organisation
RegionTheme
Victorian Ambulance Cardiac Arrest Registry
* slides unavailable for website
Marijana Lovic – Senior Research Fellow, VACAR Victorian Ambulance Cardiac Arrest Registry (VACAR) VIC Cardiac
The contribution of clinical outcomes registries globally Neil Soderlund – Partner and Managing Director, BCG
Phil Barker – Associate Consultant, BCG
Boston Consulting Group (BCG) International Registry Operation
Clinical Outcomes
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
National Radiation Oncology Register National Radiation Oncology
Pilot of a Population-Based Prostate Cancer Registry – an update A/Prof Sue Evans – Registry Custodian, Victorian Prostate Cancer Registry Victorian Prostate Cancer Registry VIC Prostate Cancer
PERFECT Stroke – the Finnish National Stroke Registry

>> WATCH VIDEO RECORDING
Atte Meretoja – Neurologist, Helsinki University Central Hospital Finnish National Stroke Registry International Stroke (Finnish)
Australian Stroke Clinical Registry (AuSCR) – an update

>> WATCH VIDEO RECORDING
Brenda Grabsch – Senior Project Manager, AuSCR Australian Stroke Clinical Registry (AuSCR) National Stroke
Out-of-hospital cardiac arrest registry ('Epistry') Prof Judith Finn – Director, Aus-ROC Australian Resuscitation Outcomes Consortium (Aus-ROC) National Cardiac
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, CREPS, Monash University
Damien Jolley – Senior Biostatistician, CREPS, Monash University
Monash University, Centre of Research Excellence in Patient Safety (CREPS) National Registry Operation Displaying Data
Developing national arrangements for clinical quality registries Nick Wilcox – Clinical Quality Registries Project, ACSQHC Australian Commission on Safety and Quality in Health Care (ACSQHC) National Registry Operation
Clinical Quality Registries
Bi-National Burns Registry – 2 years on Natalie Picton – Project Coordinator, Bi-National Burns Registry Bi-National Burns Registry Victorian Adult Burns Service Registry National
VIC
Burns
Adult Burns

2011

Presentation Title Presenter /
Organisation
Affiliated Registry /
Organisation
RegionTheme
Colorectal Cancer Registry

>> WATCH VIDEO RECORDING
Paul McMurrick – Head, Department of Surgery, Cabrini Monash University Colorectal Cancer Registry VIC Registry Operation Colorectal Cancer
Consent and ethical issues facing clinical registries: the Australian Ethics Committee perspective

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Sandra Hacker – Chair, Australian Health Ethics Committee of the NHMRC National Health and Medical Research Council (NHMRC) National Registry Operation Ethics

Data governance – the conflict between health processes and information

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Robert Hillard – Partner, Deloitte in Australia Deloitte Australia National Registry Operation

Data development activity in health

>> WATCH VIDEO RECORDING

Mel Taylor – Leader of the Metadata Information Services Unit, AIHW Australian Institute of Health and Welfare (AIHW) National Registry Operation METeOR
SNOMED-CT
ANZTADC anaesthetic incident reporting system Martin Culwick – Medical Director, ANZTADC Australian and New Zealand Tripartite Anaesthetic Data Committee (ANZTADC) National Incident Reporting

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

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

2010

Presentation Title Presenter /
Organisation
Affiliated Registry /
Organisation
RegionTheme
IT solutions and the Australian Motor Neuron Disease Registry
* slides unavailable for website
Paul Talman – Chairperson of the Steering Committee, AMNDR
Charlie Corke – Director of Intensive Care, Repatriation Hospital, Melbourne
Australian Motor Neuron Disease Registry (AMNDR) National Motor Neuron Disease Registry Operation IT Solutions
Problems, Pitfalls and Possible Successes in obtaining Medicare Data Maree Williams – Biostatistician, ARAD
Margaret Staples – Project Coordinator, ARAD
Australian Rheumatology Association Database (ARAD) National Rheumatology Association Database Registry Operation Medicare Data
Achieving Sustainable Funding Heather Wellington – Consultant, DLA Phillips Fox Health Law Practice DLA Phillips Fox National Registry Operation Sustainable Funding
Australian Stroke Clinical Registry Dominique Cadilhac – Head, Public Health, National Stroke Research Institute Australian Stroke Clinical Registry National Stroke
MSBase Registry: a multiple sclerosis registry Helmut Butzkueven – Neurologist, Royal Melbourne Hospital Multiple Sclerosis Base Registry International Multiple Sclerosis
Pilot of a prostate cancer clinical quality registry: challenges and milestones Sue Evans – Associate Director, CREPS, Monash University Victorian Prostate Cancer Clinical Quality Registry VIC Prostate Cancer
Registry guidelines for Institutional Ethics Committees John McNeil – Head, Department of Epidemiology and Preventive Medicine
Sue Evans – Associate Director, CREPS, Monash University
Monash University National Registry Operation Ethics

2009

Presentation Title Presenter /
Organisation
Affiliated Registry /
Organisation
RegionTheme
The impact of ehealth on clinical registries: what does the future hold? Karen Gibson – NEHTA National E-Health Transition Authority (NEHTA) National Registry Operation eHealth
Long term patient outcomes data: VSTORM Belinda Gabbe – Principal Investigator, VSTORM Victorian State Trauma Registry (VSTORM) VIC Trauma
ANZICS Outcomes Audit and Research Graeme Hart – Director, ANZICS Research Centre for Critical Care Research Australian and New Zealand Intensive Care Society Centre for Outcome and Resource Evaluation (ANZICS CORE) International Intensive Care Registry
Operation Outcomes Audit
What is the role of ICNARC? Kathy Rowan – Director, ICNARC (UK) Intensive Care National Audit and Research Centre (ICNARC) UK International Intensive Care
Cardiac procedures registry
(slides unavailable for website)
Christopher Reid – Associate Director, Centre of Cardiovascular Research and Education (CCRE) in Therapeutics
Carl Costolloe – Senior Research Fellow, CCRE in Therapeutics
Kate Evans – CCRE in Therapeutics
Cardiac procedures registry National Cardiac Procedures
The registry of registries: evaluating attributes of Australian clinical registries Sue Evans – Associate Director, CREPS, Monash University Monash University National Registry Operation
Legal issues relating to the establishment and management of clinical registries
(no slides used)
Bob Milstein – Medicolegal Lawyer, Corrs Chambers Westgarth Corrs Chambers Westgarth National Registry Operation
Legal issues
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, ACSQHC
Neil Heron – Cancer Information Manager, NSCCAHS
Australian Commission on Safety and Quality in Health Care (ACSQHC)
Northern Sydney Central Coast Area Health Service (NSCCAHS)
National
NSW
Registry Operation
Live Data Feeds
Registry Operation
Clinical Cancer Registries
ANZDATA: a recipe for how it works Stephen McDonald – Convenor, ANZDATA Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) International Dialysis and Transplant

2008

Presentation Title Presenter /
Organisation
Affiliated Registry /
Organisation
RegionTheme
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 National Joint Replacement Registry National Joint Replacement
ANZICS: Presenting data David Cook – Intensivist, Princess Alexandra Hospital Qld Australian and New Zealand Intensive Care Society (ANZICS) International Intensive Care
The evolution and utility of a national stroke registry: the Swedish experience Thomas Linden – Visiting Research Fellow, National Stroke Research Institute, Gothenburg (Sweden) Sweden National Stroke Registry International Stroke (Swedish)

How to run a successful registry: lessons from the USRDS

>> LISTEN TO AUDIO RECORDING

Allan J Collins – Director, USRDS United States Renal Data Services (USRDS) International Registry Operation Renal Data (US)
Record Linkage at the Department of Human Services, Past and Future Vijaya Sundararajan – Senior Medical Advisor, Funding Health Information Policy, DHS Department of Human Services (DHS) VIC Registry Operation
Record Linkage
DHS
BioGrid Australia: linking data Henry Gasko – Life Sciences Coordinator, Bio Grid Australia Bio Grid Australia National Bio Grid
Registry Operation
Linking Data
Registry Operating Standards Sue Evans – Associate Director, CREPS, Monash University
Peter Cameron – Director, CREPS, Monash University
Monash University National Registry Operation Operating Standards
The use of web data management systems for registries Andrew Hannaford – Information Systems Manager, Clinical Data Management Centre Monash University VIC Registry Operation Web Data Management Systems
Privacy issues
* slides unavailable for website
Brad Crammond – Monash University Monash University VIC Registry Operation Privacy
Australian Clinical Quality Registries Update Niall Johnson – ACSQHC Australian Commission on Safety and Quality in Health Care (ACSQHC) National Registry Operation Australian Clinical Quality Registries

2007

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