The purpose of the Registry Special Interest Group is to provide an informal forum in which people affiliated with clinical registries can discuss issues relating to any aspect of registry operation: including but not limited to issues relating to governance, management, information technology, ethics, funding, and models for improvement. It provides an opportunity to registry custodians, epidemiologists, project managers, database managers and statisticians to present work they are doing or ask for input from other people working with registries. It also builds relationships and fosters a collegial and collaborative approach to work in this area.
In addition to representatives from registries housed within the DEPM, other registry custodians participating in the Registry Special Interest Group are associated with the following registries or organisations:
- Australian Commission on Safety and Quality in Health Care
- The Australian Corneal Graft Registry
- Australian Motor Neurone Disease Registry
- Australian National Creutzfeldt-Jakob Disease Registry
- Australia and New Zealand Burn Association Pty Ltd (ANZBA) National Burns Registry Upgrade
- ANZDATA
- ANZICS
- Australian Red Cross Blood Service
- Australian Stroke Clinical Registry
- Bariatric Surgery Registry (development phase)
- BioGrid Australia
- Breast Implant Registry (development phase)
- Cerebral Palsy Register
- Chronic Disease Registry
- National Joint Replacement Registry
- National Cystic Fibrosis Data Repository
- NSW Clinical Cancer Registry
- Pilot of a Population-based Prostate Cancer Registry
- Pilot of a Population-based Victorian Lung Cancer Registry
- Transfusion Outcomes Research Collaborative (TORC) includes;
Massive Transfusion Registry
Neonatal Alloimmune Thrombocytopenia (NAIT) Registry
Thrombotic Thrombocytopenic Purpura (TTP) Registry - Victorian Spleen Registry
- VICNISS
2012 meetings for CRE in Patient Safety, Registry Special Interest Group
Please find 2012 meetings for CRE in Patient Safety, Registry Special Interest Group listed below. Meetings will be held 12pm - 2pm (noon).
The location for these meetings is:
Monash University
Level 5, The Alfred Centre
'B' Lobby (via Centre Lane)
99 Commercial Road, Prahran
Full meeting dates for 2012:
- Fri 10th February
- Fri 20th April
- Fri 15th June
- Fri 10th August
- Fri 9th November
Registry Special Interest Group presentations
Meeting presentations
- Out-of-hospital Cardiac Arrest (OHCA) Registry (Judith Finn)
- Displaying Data (Sue Evans and Damien Jolley) - Appended documents NHHRC Indicators and VQC Guide to Using Data
- Developing national arrangements for clinical quality registries (Nick Wilcox)
- Bi-National Burns Registry (Natalie Picton)
- Colorectal cancer registry (Paul McMurrick) Flash Video [84 MB]
- Consent and ethical issues facing clinical registries: the Australian Ethics Committee perspective (Sandra Hacker) Flash Video [79 MB]
- The conflict between health processes and information (Robert Hillard)
- Data development activity in health (Mel Taylor)
- Video Meeting Presentations Flash Videos [142MB and 96.6MB] (Mel Taylor and Robert Hillard)
- anztadc anaesthetic incident reporting system (Martin Culwick)
- Pilot of a lung cancer clinical registry (Sue Evans)
- What to do with missing data in clinical registry analysis (Rory Wolfe)
- Haemostasis Registry - data auditing (Louise Phillips)
- Statewide surveillance program for healthcare associated infections (Ann Bull)
- Economic appraisal in health care (Anthony Harris)
- Problems Pitfalls and Possible Successes in obtaining Medicare Data (Maree Williams & Margaret Staples)
- Achieving Sustainable Funding (Heather Wellington)
- ANZICS Outcomes Audit and Research (Graeme Hart)
- What is the role of ICNARC? (Kathy Rowan)
- Victorian Spleen Registry (Penny Jones)
- VSTORM
- BioGrid (Henry Gasko)
- Haemostasis Registry (Louise Phillips)
- Cardiac Surgery Registry (Diem Dinh)
- ANZDATA (Rowan Walker)
- Swedish National Stroke Registry (Thomas Linden MD, PhD. National Stroke Research Institute, Melbourne and Gothenburg University, Sweden.)
- Australian Clinical Quality Registries Update (Niall Johnson, Australian Commission on Safety and Quality in Healthcare)
- ANZDATA: Stephen McDonald: Convenor, The Australia and New Zealand Dialysis and Transplant Registry (ANZDATA)
- Registry of Registries (Sue Evans)
- The impact of ehealth on clinical registries (Karen Gibson)
- Long term patient outcomes data: Victorian state trauma registry (Dr Belinda Gabbe)
- MSBase Registry: a multiple sclerosis registry (Dr Helmut Butzkueven)
- Pilot of a prostate cancer clinical quality registry: challenges and milestones (Dr Sue Evans)
- How to run a successful registry: Lessons from the USRDS Presentation mp3 audio file [104MB] (Prof Allan Collins)
- AuSCR - Overview & Progress (Dr Dominique Cadilhac)
Other related presentations
- Record Linkage at the Department of Human Services, Past and Future (Vijaya Sundararajan)
- The use of web data management systems for registries (Andrew Hannaford)
- Registry Operating Standards (Sue Evans and Peter Cameron)
- Principles in Managing a Registry: Public Surveillance Systems as Grants verses Contracts. Allan J. Collins, MD, FACP. Professor of Medicine, University of Minnesota, Director, United States Renal Data System, NIH, NIDDK, DKUHD, Principle Investigator, CDC State Level Detection Program
- 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.
