Anita Deakin, South Australian Health & Medical Research Institute, anita.deakin@sahmri.com
The objective of the TAVI Registry (TAVI-R) is to define, improve and maintain the safety and quality of care for patients undergoing TAVI procedures. The TAVI-R aims to:
- Collect procedure, adverse event and outcome data from the entire TAVI population in Australia • Generate risk adjusted reports which identify areas of excellence and opportunities for improvements in the quality of TAVI care
- Provide an accurate and transparent assessment of the safety of the TAVI procedure and devices.
- Feedback to contributing clinicians
- Feedback to contributing sites, industry and Cardiac Accreditation Services Limited Pty
- Kansas City Cardiomyopathy Questionnaire (KCCQ-12) & EQ-5D 3L questionnaire completion pre-procedure and again at 30 days and 12 months post procedure
Nil
New South Wales
- Eastern Heart Clinic
- John Hunter Hospital Royal Newcastle Centre
- Lake Macquarie Private Hospital
- Liverpool Hospital
- Macquarie University Hospital
- North Shore Private Hospital
- Norwest Private Hospital
- Royal North Shore Hospital
- Royal Prince Alfred Hospital
- St George Private Hospital
- St Vincent's Private Hospital (Darlinghurst)
- Sydney Adventist Hospital
- Wesley Hospital Ashfield
Queensland
- Greenslopes Private Hospital
- Gold Coast Private Hospital
- Gold Coast University Hospital
- John Flynn Private Hospital
- Princess Alexandra Hospital
- St Andrew's War Memorial Hospital
- St Vincent’s Private Hospital Northside
- Sunshine Coast University Hospital
- The Prince Charles Hospital
South Australia
- Ashford Community Hospital
- Calvary Adelaide Hospital
- Flinders Medical Centre
- Flinders Private Hospital
- Royal Adelaide Hospital
- St Andrew's Hospital Inc
Tasmania
- Royal Hobart Hospital
Victoria
- Austin Health
- Cabrini Malvern
- Eastern Heart Clinic
- Epworth Richmond
- Jessie McPherson Private Hospital
- Knox Private Hospital
- Melbourne Private Hospital
- Monash Health Community
- Peninsula Private Hospital
- Royal Melbourne Hospital - City Campus
- St Vincent's Hospital (Melbourne) Ltd
- The Alfred
- University Hospital Geelong
Western Australia
- Fiona Stanley Hospital
- Mount Hospital
- Sir Charles Gairdner Hospital
- St John Of God Hospital, Subiaco
Corey Scholes, EBM Analytics, cscholes@ebma.com.au
PRoKPath is the clinical quality registry (self-reported) for privately consulting knee surgeon, Mr Tim Lording. This registry currently collects clinical history, treatment characteristics, and functional and patient-reported outcomes from patients undergoing treatment for knee conditions including osteoarthritis, rupture of the anterior cruciate ligaments, and conditions involving other structures of the knee joint. As the participants progress through the treatment pathway, their outcomes are assessed against pre-determined ‘failure to cure’ criteria, consisting of a combination of validated outcome measures and clinically relevant improvement thresholds (eg. minimum clinically important differences). The overall aim of the registry is to evaluate the current standard of care, and to inform evidence-based changes in clinical practice.
- Feedback to contributing clinicians
- Shared with other clinicians
- Reported in Annual Report
- Governance and steering committee comprised of various stakeholders (both clinicians and non-clinicians) receives audit report and discusses findings on a quarterly basis
- Veterans RAND 12 item Health Survey (VR-12)
- Marx Activity Scale
- International Knee Documentation Committee Subjective Knee Evaluation Form (IKDC-Subjective)
- ACL Return to Sport Index (ACL-RSI)
- Knee Osteoarthritis Outcome Score (KOOS) 21-item,12-item, or joint replacement-specific scales (KOOS, KOOS-12, KOOS-JR)
- Tegner Activity Scale
- Musculoskeletal Outcomes Data Evaluation and Management System (MODEMS) Patient Expectation Scale
- MODEMS Symptom Satisfaction
- Single Assessment Numeric Evaluation score (SANE)
- Central Sensitisation Inventory
- Willingness to undergo procedure again (global assessment item)
Nil
Victoria
- Melbourne Orthopaedic Group, East Melbourne
Nil
Meredith Cummins, NeuroEndocrine Cancer Australia, meredith@neuroendocrine.org.au
The PLANET registry is a data repository for clinical information for patients with neuroendocrine tumours (NET). It is a system designed to facilitate the exchange of information about NET patients between clinical professionals, and provides mechanisms to collect valuable information for research, and further studies.
NeuroEndocrine Cancer Australia, in collaboration with the eResearch department at Melbourne University, have developed this world class NET registry and mobile app designed to securely house NET data in one location.
- Feedback to contributing clinicians
- Shared with consumers
- Shared with medical colleges
- Shared with other clinicians
- Eastern Cooperative Oncology Group (ECOG) 30
- European Organisation for Research and Treatment of Cancer (EORTC) Gastrointestinal Neuroendocrine (GINET) 21
- Bristol Stool Scale and frequency
- ECOG performance status
- Monthly patient vitals (height, weight and BMI)
Nil
New South Wales
- GenesisCare Frenchs Forest
- GenesisCare North Shore
- Royal North Shore Hospital
Queensland
- Royal Brisbane & Womens Hospital
South Australia
- The Queen Elizabeth Hospital
Victoria
- Peter MacCallum Cancer Centre
Western Australia
- Fiona Stanley Hospital
Corey Scholes, EBM Analytics, cscholes@ebma.com.au
The Arthroplasty Outcomes in Regional Australia (AORA) registry is a clinical quality registry (self-reported) run on behalf of select orthopaedic surgeons in private practice in Grafton, NSW. This registry currently collects clinical history, treatment characteristics, and functional and patient-reported outcomes from patients undergoing treatment for knee or hip osteoarthritis. As the participants progress through the treatment pathway, their outcomes are assessed against pre-determined ‘failure to cure’ criteria, consisting of a combination of validated outcome measures and clinically relevant improvement thresholds (eg. minimum clinically important differences). The overall aim of the registry is to evaluate the current standard of care, and to inform evidence-based changes in clinical practice.
- Feedback to contributing clinicians
- Shared with other clinicians
- Reported in Annual Report
- Governance and steering committee comprised of various stakeholders (both clinicians and non-clinicians) receives audit report and discusses findings on a quarterly basis
- Preoperative health questionnaire (self-developed)
- Veterans Rand-12 General Health Survey
- Musculoskeletal Outcomes Data Evaluation and Management System (MODEMs) preoperative expectations scale
- Acute recovery questionnaire (self-developed)
- MODEMs postoperative expectations met scale; Postoperative satisfaction
- Knee injury and Osteoarthritis Score (KOOS)-12
- Hip disability and Osteoarthritis Outcome Score (HOOS)-12
Nil
New South Wales
- Specialist Orthopaedic Centre, Grafton
Nil
Corey Scholes, EBM Analytics, cscholes@ebma.com.au
The SOFARI registry is the clinical registry for a collaborative group of foot and ankle surgeons in private practice. For this registry, clinical data is compiled alongside Patient Reported Outcome Measures (PROMs) for patients diagnosed with conditions of the foot and ankle. Clinical history, treatment characteristics, functional and patient-reported outcomes are assessed against pre-determined ‘failure to cure’ criteria, consisting of a combination of validated outcome measures and clinically relevant improvement thresholds (eg. minimum clinically important differences).
- Feedback to contributing clinicians
- Shared with other clinicians
- Reported in Annual Report
- Governance and steering committee comprised of various stakeholders (both clinicians and non-clinicians) receives audit report and discusses findings on a quarterly basis
- Veterans RAND 12 item Health Survey (VR-12)
- Foot and Ankle Outcome Score (FAOS)
- MODEMs Satisfaction with Symptoms
- Pain Catastrophising Scale (PCS)
Nil
New South Wales
- Dubbo Clinics, Dubbo
- Campbelltown Specialist Clinic, Campbelltown
- Central West Orthopaedics & Sports Injuries, Westmead
- Chatswood Clinic, Chatswood
- Johnstone Street Medical Centre, Windsor
- Mater Clinic, Wollstonecraft
- North Sydney Orthopaedic and Sports Medicine Centre
- North Sydney Sports Medicine, St Leonards
- Northern Beaches Clinic, Frenchs Forest
- San Clinic, Wahroonga
- South West Sydney Orthopaedics, Liverpool
- Stadium Sports Medicine Clinic, Moore Park
- St George Private Hospital Specialist Consulting Suites, Kogarah
- Westmead Private Hospital Consulting Suites, Westmead
Nil
Cecilia Ng, Jean Hailes for Women's Health, cecilia.ng@unsw.edu.au
The NECST Registry is a national resource of standardised patient data that will facilitate high quality research aiming to understand the causes of endometriosis, improve diagnosis and treatment outcomes, and reduce the burden of disease for patients living with endometriosis, endometriosis-related symptoms, or endometriosis-related conditions (like adenomyosis).
Population: Women and those assigned female at birth aged 18+, have had surgery which has confirmed that you have endometriosis or adenomyosis or have any of the following symptoms - persistent pelvic pains, problems with falling pregnant, excessive menstrual bleeding or bleeding between periods, heavy periods, pain when urinating, pain with bowel motions/passing stools and pain with sex.
Data collection and outcomes: Health and clinical data are collected across eight modules 1. Consent and participant demographics 2. Clinical presentation and medical history 3. Patient reported outcome measures (PROMs; EQ-5D and EHP-30) 4. Environmental and lifestyle risk factors 5. Imaging tests 6. Medical management 7. Surgical management 8. Histopathology
- Feedback to contributing clinicians
- Shared with consumers
- Reported to Federal Health Department
- Annual Progress report to ethics
- EuroQol EQ-5D-5LC
- Endometriosis Health Profile EHP-30
To be determined
New South Wales
- Prince Of Wales Private Hospital
- Royal Hospital For Women
- St George Hospital
- Westmead Hospital
South Australia
- Women's and Children's Hospital
Victoria
- Monash Health
- Royal Women's Hospital
Kevin Eng, Geelong Orthopaedics, kevineng@geelongortho.com.au
The PRULO registry is the clinical registry for a collaborative group of upper limb orthopaedic surgeons consulting privately out of Geelong Orthopaedics, Victoria. This registry currently collects clinical history, treatment characteristics, and functional and patient-reported outcomes from patients undergoing treatment for upper limb conditions including osteoarthritis of the shoulder, and rotator cuff tear. As the participants progress through the treatment pathway, their outcomes are assessed against pre-determined ‘failure to cure’ criteria, consisting of a combination of validated outcome measures and clinically relevant improvement thresholds (eg. minimum clinically important differences). The overall aim of the registry is to evaluate the current standard of care, and to inform evidence-based changes in clinical practice.
- Feedback to contributing clinicians
- Shared with other clinicians
- Reported in Annual Report
- Governance and steering committee comprised of various stakeholders (both clinicians and non-clinicians) receives audit report and discusses findings on a quarterly basis
- EuroQol 5-Dimension, 5 Level (EQ-5D-5L) quality of life questionnaire
- Quick Disabilities of the Arm, Shoulder and Hand questionnaire (Quick DASH)
- Western Ontario Rotator Cuff (WORC) Score
- Oxford Shoulder Instability Score (OSIS)
- MODEMs Patient Expectation Scale
- Treatment satisfaction
Nil
Victoria
- Geelong Orthopaedics
Nil
Lorenzo Calabro, Queen Elizabeth II Jubilee Hospital, Metro South Health, QLD Health, lorenzo.calabro@health.qld.gov.au
The Queen Elizabeth II Jubilee Hospital’s Shoulder, Hip Arthroplasty and Knee Surgery (SHArKS) registry began in 2017 as a single-surgeon database, and has evolved to include patients presenting to one of several participating surgeons in the department of orthopaedics. The aim of the SHArKS registry is to facilitate the collection of patient-reported outcomes and compilation of data from across the entire department, to evaluate the current standard of care and inform evidence-based changes in clinical practice.
- Feedback to contributing clinicians
- Shared with other clinicians
- Reported in Annual Report
- Governance and steering committee comprised of various stakeholders (both clinicians and non-clinicians) receives audit report and discusses findings on a quarterly basis
Each registry cohort completes up to eight of the following PROMs, depending on presenting pathology:
- EuroQol 5-Dimension (EQ-5D)
- Veteran’s Rand 12 item score (VR-12)
- Constant-Murley Score
- VAS Pain; SANE Function
- Western Ontario Osteoarthritis Score (WOOS)
- Oxford shoulder score (OSS)
- Oxford shoulder instability score (OSIS)
- Western Ontario Rotator Cuff (WORC) Score
- Oxford Knee Score (OKS)
- Tegner Activity Scale
- Shoulder Activity Scale (Brophy et al. 2005)
- International Knee Documentation Committee Subjective Score (IKDC)
- Oxford Hip Score (OHS)
- Treatment Satisfaction
- MODEMS Patient Expectation Scale
- ACL Return to Sport Index (ACL-RSI)
- Return to Sport/activity Expectations (Webster and Feller, 2019)
- Tampa Scale of Kinesiophobia - 11 (TSK-11)
Nil
Queensland
- Mater Private Hospital Springfield
- Queen Elizabeth II Jubilee Hospital
Nil
Kelly Skelton, The Australian Bragg Centre for Proton Therapy and Research, kelly.skelton@sahmri.com
The Australian Particle Therapy Clinical Quality Registry (ASPIRE) was initiated to collect participant data to describe the patterns of care for patients receiving conventional Xray therapy (Photon) versus Proton Beam therapy (PBT) as part of ongoing government funding of PBT. Current Medicare Benefits Schedule (MBS) items exist for some paediatric, adolescent and rare adult tumours to be treated with PBT. A lack of evidence reporting the long-term side effects of photon versus PBT means there is a recognised disparity in equity of access to PBT for other tumour types. The ASPIRE registry is a prospective, observational, longitudinal study of paediatric, adolescent, young adult (AYA) and rare adult tumour patients from a select group of tumour streams treated with radiotherapy, being those that are in the MBS approved list. The primary objective of the registry is to describe the long-term effects and disease control outcomes with a specific focus on side effects patients experience from their radiation treatment and the economic savings by improving radiotherapy side effects.
- Feedback to contributing clinicians
- Shared with other clinicians
- Shared with hospital executives
- Shared with consumers
- Shared with medical colleges
- Reported to State/Territory health departments
- Reported in Annual Report
- Reported in other public reports
Intention is to include this in the future
Intention is to include this in the future
Northern Territory
- Alan Walker Cancer Care Centre
South Australia
- The Royal Adelaide Hospital
Victoria
- Monash Children's Hospital
Western Australia
- Sir Charles Gairdner Hospital
Julie Stout, Monash University, Julie.Stout@monash.edu
The Map-HD Registry is a collection of data about people in Australia who are affected by Huntington’s disease (HD). All family members of people affected by HD are encouraged to register, whether or not they are at risk themselves.
The Map-HD Registry is needed to:
- Map where families affected by HD live in Australia, so that care, services, and funding can be directed to the right locations
- Establish how many people are affected by HD, and in what ways, to support requests to the Commonwealth and local governments for improved funding of care and new treatments; and
- Provide essential information needed for future HD treatments to be approved in Australia and listed on the Pharmaceutical Benefits Scheme (PBS).
Reported in Annual Report - shared with all HD clinics and HD state associations.
Nil
Nil
New South Wales
- Westmead (access only)
Queensland
- Royal Brisbane & Women's Hospital
South Australia
- Flinders Medical Centre
- Royal Adelaide Hospital
Victoria
- Calvary Health Care Bethlehem
- Monash University (registry management site only)
- Royal Melbourne Hospital
Western Australia
- North Metropolitan Health Service, Mental Health, Public Health and Dental Services, Neurosciences Unit WA
Codes that can be used to identify patients diagnosed with sepsis from routinely collected data.
Helena Kopunic, Royal Australasian College of Surgeons, ANZASM.RACS@surgeons.org
The Australian and New Zealand Audit of Surgical Mortality (ANZASM) is a group of regionally based surgical patient mortality audits identified as ACTASM (Australian Capital Territory), CHASM (NSW), NTASM (Northern Territory), QASM (Queensland), SAASM (South Australia), TASM (Tasmania), VASM (Victoria) and WAASM (Western Australia). The ANZASM is managed by the Royal Australasian College of Surgeons (RACS). Each of the regionally based audits is under the governance of the ANZASM, with the exception of the Collaborating Hospitals Audit of Surgical Mortality (NSW) which is managed by the NSW Clinical Excellence Commission and co-governed in collaboration with RACS.
The ANZASM provides an independent peer-review mechanisms for surgeons, anaesthetists, gynaecologists, radiologists, ophthalmologists and oral and maxillofacial surgeons relating to patient deaths occurring in a hospital where: (a) the patient was under the care of a surgeon (surgical admissions), whether or not an operation was performed; or (b) the patient was under the care of a physician (medical and non- surgical admission) and there was surgical intervention. The ANZASM includes, but is not limited to: (a) notification of death by surgeon, anaesthetist, gynaecologist, radiologist, ophthalmologist, oral and maxillofacial surgeon, hospital or health system; (b) completion and review of relevant case form; (c) report to treating surgeon, anaesthetist, gynaecologist, radiologist, ophthalmologist, or oral and maxillofacial surgeon by assessing surgeon; (d) public reporting on aggregated data; (e) strategic and national review by the ANZASM Steering Committee; and (f) the making of recommendations and monitoring of the implementation of those recommendations.
- Feedback to contributing clinicians
- Shared with hospital executive
- Reported to State/Territory health departments
- Reported in Annual Report
Nil
Nil
Australian Capital Territory
- Barton Private Hospital
- Calvary Bruce Private Hospital
- Calvary John James Hospital
- Calvary Public Hospital
- Canberra Hospital
- Canberra Private Hospital
- Capital Day Surgery
- National Capital Private Hospital
- War Memorial Hospital
New South Wales
- Albury Wodonga Health - Albury Campus
- Armidale and New England Hospital
- Ashbrooke Cosmetic Surgery
- Auburn Hospital
- Ballina District Hospital
- Balmain Hospital
- Balranald District Hospital
- Bankstown / Lidcombe Hospital
- Barraba Multi Purpose Service (Hospital)
- Batemans Bay Hospital
- Batemans Bay District Hospital
- Bathurst Base Hospital
- Bathurst Private Hospital
- Bega District Hospital
- Bega - South East Regional Hospital
- Bellingen River District Hospital
- Belmont District Hospital
- Berkeley Vale Private Hospital
- Bingara Hospital
- Blacktown and Mount Druitt Hospital
- Blayney Hospital
- Blue Mountains District ANZAC Memorial Hospital
- Bombala Hospital
- Bondi Junction Private Hospital
- Bourke District Hospital
- Bourke Street Health Service
- Bowral and District Hospital
- Braeside Hospital
- Brewarrina Hospital and Health Service
- Brisbane Waters Private Hospital
- Broken Hill Hospital
- Bulli District Hospital
- Byron District Hospital
- Calvary Health Care Kogarah
- Calvary Health Care Riverina
- Calvary Mater Newcastle Hospital
- Camden Hospital
- Campbelltown Hospital
- Campbelltown Private Hospital
- Canowindra Soldiers Memorial Hospital
- Canterbury Hospital
- Casino and District Memorial Hospital
- Cessnock Hospital
- Cobar District Hospital
- Coffs Harbour Base Hospital
- Coledale Hospital
- Collarenebri Multi Purpose Service
- Concord Hospital
- Condobolin District Hospital
- Cooma Hospital
- Coonabarabran Health Service
- Coonamble Multipurpose Service
- Cootamundra Hospital
- Coraki Campbell Health One
- Cowra District Hospital
- Crookwell District Hospital
- Dalcross Private Hospital
- David Berry Hospital
- Dorrigo Multipurpose Service
- Dubbo Base Hospital
- Dubbo Private Hospital
- Dudley Private Hospital
- Dunedoo Health Service
- Dungog Hospital
- Fairfield Hospital
- Figtree Private Hospital
- Forbes District Hospital
- Forster Private Hospital
- Glen Innes District Hospital
- Gloucester Soldiers' Memorial Hospital
- Gosford Hospital
- Gosford Private Hospital
- Goulburn Base Hospital
- Grafton Base Hospital
- Greenwich Hospital
- Grenfell Multi Purpose Service
- Griffith Base Hospital
- Gulgong Health Service
- Gundagai District Hospital
- Gunnedah District Hospital
- Hawkesbury Private Hospital
- Hillston Multi Purpose Service
- Hirondelle Private Hospital
- Hornsby Ku-Ring-Gai Hospital
- Hunter Valley Private Hospital
- Inverell District Hospital
- John Hunter Children's Hospital
- John Hunter Hospital
- Kareena Private Hospital
- Kempsey District Hospital
- Kiama Hospital
- Kurri Kurri District Hospital
- Kyogle Memorial Hospital
- Kyogle Multi-Purpose Service
- Lady Davidson Private Hospital
- Lake Macquarie Private Hospital
- Leeton District Hospital
- Lightning Ridge Multi Purpose Service
- Lingard Private Hospital
- Lismore Base Hospital
- Lithgow Hospital
- Liverpool Hospital
- Longueville Private Hospital
- Macksville District Hospital
- Maclean District Hospital
- Macquarie University Hospital
- Maitland Hospital
- Maitland Medical Centre
- Maitland Private Hospital
- Manilla Hospital
- Manly District Hospital
- Manly Waters Private Hospital
- Manning Base Hospital
- Mater Hospital, North Sydney
- Mayo Private Hospital, Taree
- Mercy Health Service, Young
- Milton Ulladulla Hospital
- Molong District Hospital
- Mona Vale District Hospital
- Moree District Hospital
- Moruya District Hospital
- Mount Druitt Hospital
- Mount Pleasant Medical Centre
- Mount Wilga Private Hospital
- Mudgee District Hospital
- Mullumbimby Hospital
- Murwillumbah District Hospital
- Muswellbrook District Hospital
- Narrabri District Hospital
- Narrandera District Hospital
- Nepean Hospital
- Nepean Private Hospital
- Newcastle Private Hospital
- North Shore Private Hospital
- Northern Beaches Hospital
- Norwest Private Hospital
- Nowra Private Hospital
- Orange Base Hospital
- Pambula District Hospital
- Parkes District Hospital
- Port Kembla Hospital
- Port Macquarie Base Hospital
- President Private Hospital
- Prince of Wales Hospital
- Prince of Wales Private
- Queanbeyan District Hospital and Health Service
- Quirindi Community Hospital
- Rankin Park Rehabilitation
- Royal Hospital for Women
- Royal Newcastle Hospital
- Royal North Shore Hospital
- Royal Prince Alfred Hospital
- Ryde Hospital
- Scott Memorial Hospital; Scone
- Shellharbour Hospital
- Shellharbour Private Hospital
- Shoalhaven District Memorial Hospital
- Singleton District Hospital
- South East Regional Hospital
- Southern Highlands Private Hospital
- Springwood Hospital
- St George Hospital
- St George Private Hospital
- St Vincent's Hospital; Darlinghurst
- St Vincent's Private Hospital
- St Vincent's Private Hospital - Lismore
- Strathfield Private Hospital
- Sutherland Hospital
- Sydney Adventist Hospital
- Sydney Children's Hospital
- Sydney Hospital & Sydney Eye Hospital
- Sydney Private Hospital
- Sydney South West Private Hospital
- Tamara Private Hospital
- Tamworth Base Hospital
- Temora Hospital
- Tenterfield Community Hospital
- Children's Hospital at Westmead
- Cootamundra Hospital
- Hills Private Hospital
- Mater Private Hospital
- Tweed Hospital
- Wollongong Hospital
- Tomaree Community Hospital
- Trangie Multi Purpose Service
- Tumut District Hospital
- Wagga Wagga Base Hospital
- Walcha Multi Purpose Service
- Walgett Hospital
- Warialda Multi Purpose Service
- Warners Bay Private Hospital
- Warren Multi-Purpose Health Service
- Wauchope District Memorial Hospital
- Wee Waa Hospital
- Westmead Hospital
- Westmead Children's Hospital
- Westmead Private Hospital
- Wollongong Private Hospital
- Wolper Jewish Hospital
- Wyalong Hospital
- Wyong Hospital
- Yass District Hospital
- Young District Hospital
Northern Territory
- Alice Springs Hospital
- Darwin Private Hospital
- Gove District Hospital
- International Hospital - NT
- Katherine District Hospital
- Palmerston Regional Hospital
- Royal Darwin Hospital
- Tennant Creek Hospital
Queensland
- Allamanda Private Hospital - CLOSED
- Alpha Hospital
- Aramac Hospital
- Arthur Gorrie Correctional Centre
- Atherton Hospital
- Augathella Hospital
- Aurukun Remote Centre
- Ayr Hospital
- Babinda Health Centre
- Baillie Henderson
- Ballina Hospital
- Bamaga Hospital
- Barcaldine Hospital
- Beaudesert Hospital
- Biggenden Hospital
- Biloela Hospital
- Birdsville Hospital
- Blackall Hospital
- Boonah Hospital
- Boulia Hospital
- Bowen Hospital
- Brisbane Endoscopy Services
- Brisbane Private Hospital
- Buderim Private Hospital
- Bundaberg Hospital
- Burketown Health Centre
- Caboolture Hospital
- Caboolture Private Hospital
- Cairns Day Surgery
- Cairns Hospital
- Cairns Private Hospital
- Caloundra Hospital
- Caloundra Private Hospital
- Canossa Private Hospital
- Capricorn Coast Hospital
- Charleville Hospital
- Charters Towers Hospital
- Chermside Day Hospital
- Chermside Dialysis Clinic
- Childers Hospital
- Chinchilla Hospital
- Clermont Hospital
- Coen Primary Health Care Centre
- Collinsville Hospital
- Cooktown Hospital
- Cunnamulla Hospital
- Dalby Hospital
- Dauan Island Primary Health Centre
- Dirranbandi Hospital
- Dysart Hospital
- Emerald Hospital
- Enoggera 2nd Health Support Battalion
- Esk Hospital
- Friendly Society Private Hospital
- Gatton Hospital
- Gayndah Hospital
- Georgetown Primary Health Centre
- Gin Gin Hospital
- Gladstone Hospital
- Gold Coast Private Hospital
- Gold Coast Surgical Hospital - CLOSED
- Gold Coast University Hospital
- Goondiwindi Hospital
- Gordonvale Hospital
- Greenslopes Private Hospital
- Gympie Hospital
- Gympie Private Hospital - CLOSED
- Hamilton Island Medical Centre
- Herberton Hospital
- Hervey Bay Hospital
- Hervey Bay Surgical Hospital
- Hillcrest Rockhampton Private Hospital
- Home Hill Health Service
- Hughenden Hospital
- Ingham Hospital
- Innisfail Hospital
- Ipswich Day Hospital
- Ipswich Hospital
- Jandowae Hospital
- John Flynn Private Hospital
- Julia Creek Hospital
- Kawana Private Hospital
- Kilcoy Hospital
- Kingaroy Hospital
- Kowanyama Hospital
- Lady Bjelke-Petersen Community Hospital
- Laidley Hospital
- Lockhart River Primary Health Care Centre
- Logan Hospital
- Longreach Hospital
- Mackay Base Hospital
- Mackay Specialist Day Hospital
- Magnetic Island Medical Centre
- Maleny Hospital
- Mareeba Hospital
- Maryborough Hospital
- Mater Children's Hospital - CLOSED
- Mater Children's Private Hospital
- Mater Hospital Brisbane
- Mater Hospital Bundaberg
- Mater Hospital Gladstone -CLOSED
- Mater Hospital Mackay
- Mater Hospital Rockhampton
- Mater Mothers' Hospital
- Mater Mothers' Private Hospital
- Mater Private Hospital Brisbane
- Mater Private Hospital Hyde Park
- Mater Private Hospital Redland
- Mater Private Hospital Springfield
- Mater Private Hospital Townsville
- Miles Health Services
- Mitchell Hospital
- Monto Hospital
- Moranbah Hospital
- Mornington Island Hospital
- Mossman Hospital
- Mount Isa Hospital
- Mount Morgan Hospital
- Mungindi Hospital
- Murgon Hospital
- Nambour Day Surgery
- Nambour General Hospital
- Nambour Selangor Private Hospital
- Nanango Hospital
- Noosa Hospital
- Noosa Surgical and Endoscopy Centre
- Normanton Hospital
- North West Private Hospital
- Northside Endoscopy Service
- Oakey Hospital
- Pacific Day Surgery Centre
- Pacific Private Day Hospital
- Pacific Private Hospital
- Palm Island Hospital
- Peninsula Private Hospital
- Peninsula Specialist Centre
- Pindara Private Hospital
- Pioneer Valley Private Hospital
- Prince Charles Hospital
- Princess Alexandra Hospital
- Proserpine Hospital
- Queen Elizabeth II Jubilee Hospital
- Queensland Children's Hospital
- Redcliffe Hospital
- Redland Hospital
- Richmond Hospital, Richmond Hill
- Robina Hospital
- Rockhampton Hospital
- Roma Hospital
- Royal Brisbane and Women's Hospital
- Royal Children's Hospital - CLOSED
- Sarina Hospital
- South Bank Day Hospital
- South Burnett Private Hospital - CLOSED
- Southcoast Digestive Diseases Centre
- Southport Day Hospital
- Springsure Hospital
- St Andrew's Ipswich Private Hospital
- St Andrew's Toowoomba Hospital
- St Andrew's War Memorial Hospital
- St George Hospital
- St Stephen's Hospital Hervey Bay
- St Stephen's Maryborough Hospital - CLOSED
- St Vincent’s Private Hospital Northside
- St Vincent's Private Hospital Brisbane
- St Vincent's Private Hospital Toowoomba
- Stanthorpe Hospital
- Sunnybank Private Hospital
- Sunshine Coast University Hospital
- Sunshine Coast University Private Hospital
- Surat Hospital
- Surgical, Treatment and Rehabilitation Service
- T&G Day Surgery
- Tara Hospital
- Taroom Hospital
- Texas Hospital
- Thursday Island Hospital
- Toowong Private Hospital
- Toowoomba Hospital
- Toowoomba Surgicentre
- Townsville Day Surgery
- Townsville University Hospital
- Tri Rhosen Day Hospital
- Tully Hospital
- Tweed Day Surgery
- Tweed Hospital
- Varsity Lakes Day Hospital
- Warwick Hospital
- Weipa Integrated Health Service
- Wesley Hospital
- Winton Hospital
South Australia
- Adelaide Day Surgery
- Angaston District Hospital
- Ardrossan Community Hospital
- Ashford Hospital
- Balaklava Soldiers’ Memorial District Hospital
- Barossa Hills Fleurieu Region
- Blackwood Hospital
- Booleroo Centre Hospital
- Bordertown Memorial Hospital
- Burnside War Memorial Hospital
- Calvary Adelaide Hospital
- Calvary Central District Hospital
- Calvary North Adelaide Hospital
- Ceduna District Health Services
- Central Districts Private Hospital
- Clare Hospital
- Coober Pedy Hospital
- Crystal Brook Hospital
- Cummins & District Memorial Hospital
- Flinders Medical Centre
- Flinders Private Hospital
- Gawler Health Service
- Glenelg Community Hospital Incorporated
- Gumeracha District Soldiers Memorial Hospital
- Jamestown Hospital & Health Service
- Julia Farr Centre - CLOSED
- Kangaroo Island Health Service
- Kapunda Hospital
- Kimba District Hospital
- Lameroo District Health Service
- Loxton Hospital Complex
- Lyell McEwin Hospital
- Marree Health Service
- McLaren Vale and Districts War Memorial Hospital
- Memorial Hospital
- Meningie & Districts Memorial Hospital & Health Service
- Mid-West Health Elliston
- Millicent and District Hospital and Health Service
- Modbury Hospital
- Moonta Health & Aged Care Service
- Mount Barker District Soldiers' Memorial Hospital
- Mount Gambier & Districts Health Service
- Murray Bridge Soldiers' Memorial Hospital
- Naracoorte Health Service
- Noarlunga Health Services Incorporated
- North Eastern Community Hospital
- Northern Yorke Peninsula Hospital
- Oodnadatta Hospital
- Parkwynd Private Hospital - CLOSED
- Peterborough Soldiers' Memorial Hospital
- Port Augusta Hospital and Regional Health Service
- Port Lincoln Hospital and Health Service
- Port Pirie Regional Health Service
- Queen Elizabeth Hospital
- Quorn Health Service
- Renmark Paringa District Hospital
- Repatriation General Hospital, Daw Park
- Riverland Regional Hospital
- Royal Adelaide Hospital
- South Coast District Hospital
- Southern Yorke Peninsula Health Service
- Sportsmed SA
- St Andrew's Hospital
- Stirling District Hospital
- Strathalbyn & District Health Service
- Tailem Bend District Hospital
- Tanunda War Memorial Hospital
- Waikerie Health Services
- Wallaroo Hospital and Health Services
- Whyalla Hospital and Health Service
- Women's & Children's Hospital
- Yorketown Hospital and Health Service
Tasmania
- Calvary Hospital Hobart
- Calvaray St John's Hospital
- Hobart Day Surgery Pty Ltd
- Hobart Private Hospital
- Launceston General Hospital
- Mersey Community Hospital
- North West Private Hospital
- North West Regional Hospital
- Royal Hobart Hospital
- St Helens Private Hospital
- St Luke's Private Hospital
- St Vincent's Hospital
- The Eye Hospital
Victoria
- Aesthetic Surgery and Laser Centre
- Albert Road Clinic
- Albury Wodonga Health - Wodonga Campus
- Albury Wodonga Private Hospital
- Alexandra District Hospital
- Alfred Health
- Alfred Health - Caulfield
- Alfred Health - Sandringham
- Alpine Health
- Appearance Medical Centre
- Austin Health - Austin Hospital
- Austin Health - Heidelberg Repatriation Hospital
- Austin Health - Repatriation Hospital
- Avenue Hospital
- Bairnsdale Regional Health Service
- Ballarat Day Procedure Centre
- Ballarat Health Service
- Barwon Health
- Bass Coast Health
- Bayside Day Procedure and Specialist Centre
- Bayside Endoscopy Day Hospital
- Beaufort and Skipton Health Service
- Beechworth Health Service
- Beleura Private Hospital
- Bellbird Private Hospital
- Benalla Health
- Bendigo Health Care Group
- Berkeley Day Surgery
- Berwick Surgicentre
- Boort District Hospital
- Brighton Plastic Surgery Centre
- Bundoora Endoscopy Centre
- Bundoora Extended Care Centre
- Cabrini Health
- Cabrini Health - Brighton
- Cabrini Health - Malvern
- Calvary Health Care Bethlehem
- Camberwell Eye Clinic Day Surgery
- Caritas Christi Hospice
- Casterton Memorial Hospital
- Castlemaine Health
- Central Gippsland Health Service
- Central Highlands Rural Health
- Central Highlands Rural Health - Hepburn
- Central Highlands Rural Health - Kyneton
- Centre of Cosmetic and Plastic Surgery (Melbourne)
- Chesterville Day Hospital
- Cliveden Hill Private Hospital
- Coburg Endoscopy Centre
- Cohuna District Hospital
- Colac Area Health
- Como Private Hospital
- Corryong Health
- Cotham Private Hospital
- Croydon Day Surgery Centre
- Dandenong Eye Clinic
- Darebin Endoscopy Services
- Dental Health Services Victoria
- Diaverum Diamond Valley Clinic
- Digestive Health Centre
- Djerriwarrh Health Service
- Donvale Rehabilitation Hospital
- Dr Walters Vasectomy Clinic
- Dunmunkle Health Services
- East Grampians Health Service
- East Wimmera Health Service
- Eastern Eye Surgery Centre
- Eastern Health
- Eastern Health - Angliss
- Eastern Health - Box Hill
- Eastern Health - Healesville
- Eastern Health - Maroondah
- Eastside Endoscopy Centre
- Echuca Regional Health
- Edenhope and District Hospital
- Elsternwick Private Hospital
- Epworth HealthCare
- Epworth HealthCare - Cliveden Hill
- Epworth HealthCare - Eastern
- Epworth HealthCare - Freemasons
- Epworth HealthCare - Geelong
- Epworth HealthCare - Richmond
- Essendon Day Procedure Centre
- Essendon Private Hospital
- Eye Clinic Footscray
- Fertility Control Clinic
- Forest Hill Dialysis Centre
- Frances Perry House
- Frankston Private Day Surgery
- Geelong Private Hospital
- Gippsland Southern Health Service
- Glen Eira Day Surgery
- Glenferrie Private Hospital
- Goulburn Valley Health
- Heidelberg Endoscopy and Day Surgery Centre
- Hesse Rural Health Service
- Heywood Rural Health
- Hobson Bay Endoscopy Werribee
- Hobsons Bay Endoscopy Centre
- Holmesglen Private Hospital
- Hyperbaric Health
- Inglewood and District Health Service
- Ivanhoe Endoscopy and Day Procedure Centre
- John Fawkner Private Hospital
- Jolimont Endoscopy
- Kerang and District Health
- Kew Endoscopy Centre
- Kew Private Dialysis Centre
- Kilmore District Hospital
- Kingston Centre
- Knox Private Hospital
- Knox Surgicentre
- Kooweerup Regional Health Service
- Kyabram and District Health Service
- Latrobe Private Hospital
- Latrobe Regional Hospital
- Linacre Private Hospital
- Lorne Community Hospital
- Maldon Hospital
- Mallee Track Health and Community Service
- Malvern Private
- Manangatang and District Hospital
- Manningham Day Procedure Centre
- Mansfield District Hospital
- Maryborough District Health Service
- Maryvale Private Hospital
- Masada Private Hospital
- McIvor Health and Community Services
- Melbourne Day Surgery
- Melbourne Eastern Private Hospital
- Melbourne Endoscopy Group Day Procedure Centre
- Melbourne Endoscopy Monash Day Procedure Centre
- Melbourne Family Planning Clinic
- Melbourne Health
- Melbourne Health - Royal Melbourne Hospital
- Melbourne Health - Royal Park Campus
- Melbourne Private Hospital
- Mercy Hospital for Women
- Mercy Public Hospitals Inc
- Mildura Base Hospital
- Mildura Health Private Hospital
- Mitcham Private Hospital
- Monash Health
- Monash Health - Casey
- Monash Health - Clayton
- Monash Health - Cranbourne
- Monash Health - Dandenong
- Monash Health - Jessie McPherson Private Hospital
- Monash Health - Moorabbin
- Monash IVF Clinic
- Monash Surgical Private Hospital
- Mount Eliza Rehabilitation, Aged & Palliative Care
- Moyne Health Services
- Mulgrave Private Hospital
- Murray Valley Private Hospital
- Nathalia District Hospital
- NCN Health- Cobram Campus
- NCN Health- Numurkah Campus
- Neerim District Health Service
- Nhill Medical Clinic
- Noble Park Endoscopy Centre
- North West Endoscopy Services
- Northeast Health Wangaratta
- Northern Health
- Northern Health - Broadmeadows
- Northern Hospital
- Northpark Private Hospital
- O'Connell Family Centre (Grey Sisters)
- Omeo District Health
- Orbost Regional Health
- Otway Health and Community Services
- Peninsula Endoscopy Centre
- Peninsula Health - Frankston Hospital
- Peninsula Health - Rosebud Hospital
- Peninsula Oncology Centre
- Peninsula Private Hospital
- Peter James Centre
- Peter MacCallum Cancer Centre
- Portland District Health
- Queen Elizabeth Centre
- Radiation Oncology Centre - Frankston
- Radiation Oncology Victoria - Murray Valley
- Radiation Oncology Victoria - Ringwood
- Reservoir Private Hospital
- Ringwood Private Hospital
- Robinvale District Health Services
- Rochester and Elmore District Health Service
- Rosebud SurgiCentre
- Royal Children's Hospital - Melbourne
- Royal Talbot Rehabilitation Centre
- Royal Victorian Eye and Ear Hospital
- Royal Women's Hospital - Melbourne
- Rural Northwest Health
- Seymour District Memorial Hospital - Seymour Health
- Shepparton Private Hospital
- Sir John Monash Private Hospital
- South Eastern Private Hospital
- South Gippsland Hospital
- South West Healthcare
- South West Healthcare - Camperdown
- South West Healthcare - Warrnambool
- Southern Eye Centre, Day Surgery and Laser Clinic
- Specialist Surgicentre Docklands
- Specialist Surgicentre Geelong
- Springvale Endoscopy Services
- St George's Health Service - Kew
- St John of God Hospital - Ballarat
- St John of God Hospital - Bendigo
- St John of God Hospital - Berwick
- St John of God Hospital - Geelong
- St John of God Hospital - Warrnambool
- St Kilda Day Hospital
- St Kilda Laservision Centre
- St Vincent's Hospital
- St Vincent's Private
- St Vincent's Private - Mercy
- St Vincent's Private - Kew
- Stawell Regional Health
- Stonnington Day Surgery
- Swan Hill District Hospital
- Swan Hill Medical Group
- Taburn Specialist Medical Centre
- Tallangatta Health Service
- Terang and Mortlake Health Service
- The Bays Hospital
- The Glen Endoscopy Centre
- The Hampton Park Women's Health Care Centre
- The Women's Clinic Day Surgical Centre
- Timboon and District Healthcare Service
- Toorak Malvern Day Surgery Centre
- Toorak Cosmetic Surgery Day Centre
- Tweddle Child and Family Health Service
- Vermont Private Hospital
- Victoria Parade Day Surgery (Derm & Cosmetic)
- Victoria Parade Surgery Centre
- Wangaratta Private Hospital
- Warringal Private Hospital
- Waverley Endoscopy
- Waverley Private Hospital
- Werribee Mercy Hospital
- West Gippsland Healthcare Group
- West Wimmera Health Service
- Western Day Surgery
- Western District Health Service - Hamilton
- Western District Health Service - Coleraine Campus
- Western Health
- Western Health - Footscray
- Western Health - Sunshine
- Western Health - Williamstown
- Western Private Hospital
- Western Suburbs Endoscopy Services
- Westpoint Endoscopy Day Hospital
- Wimmera Health Care Group
- Yarram and District Health Service
- Yarrawonga District Health Service
- Yea and District Memorial Hospital
Western Australia
- Albany Hospital
- Armadale-Kelmscott Memorial Hospital
- Attadale Private Hospital
- Bentley Health Service
- Bethesda Hospital
- Boyup Brook Soldiers Memorial Hospital
- Bridgetown Hospital
- Broome Hospital
- Bruce Rock Memorial Hospital
- Bunbury Regional Hospital
- Busselton Hospital
- Carnarvon Hospital
- Colin Street Day Surgery
- Collie Health Service
- Denmark Hospital and Health Service
- Derby Hospital
- Esperance Hospital
- Exmouth Multipurpose Service
- Fiona Stanley Hospital
- Fremantle Hospital & Health Service
- Galliers Wing and Specialist Centre
- Geraldton Hospital
- Glengarry Private Hospital
- Harvey Hospital
- Hedland Health Campus
- Hollywood Private Hospital
- Joondalup Health Campus
- Kalamunda District Community Hospital
- Kaleeya Hospital - CLOSED
- Kalgoorlie Hospital
- Katanning Hospital
- King Edward Memorial Hospital for Women
- Kununurra Hospital
- Lake Grace District Hospital
- Lions Eye Institute
- Manjimup Hospital
- Margaret River Hospital
- Mawarnkarra Health Service
- McCourt Street Day Surgery
- Meekatharra District Hospital
- Merredin District Hospital
- Moora Hospital
- Mount Hospital
- Mt Lawley Private Hospital
- Murdoch Surgicentre
- Narrogin Regional Hospital
- Newman Hospital
- Nickol Bay Hospital - CLOSED
- Northam Regional Hospital
- Osborne Park Hospital
- Paraburdoo District Hospital
- Peel Health Campus
- Pemberton Hospital
- Pivet Medical Centre
- Plantagenet Cranbrook Hospital (Mount Barker Hospital)
- Princess Margaret Hospital
- Princess Margaret Hospital for Children
- Rockingham General Hospital
- Royal Perth Hospital
- Royal Perth Hospital Shenton Park Campus
- Sir Charles Gairdner Hospital
- South Perth Hospital
- Southern Cross District Hospital
- St John of God Bunbury Hospital
- St John of God Geraldton Hospital
- St John of God Mount Lawley Hospital
- St John of God Murdoch Hospital
- St John of God Subiaco Hospital
- Subiaco Private Hospital
- Swan Kalamunda Health Service
- Tom Price District Hospital
- Waikiki Private Hospital
- Warren District Hospital
- Westminster Day Surgery
- Wongan Hills Hospital
- York Hospital
Papua New Guinea
- Port Moresby General Hospital
Nauru
- Nauru Hospital
New Zealand
- Wellington Hospital
Associate Professor Shankar Siva, Peter MacCallum Cancer Centre, shankar.siva@petermac.org
Although surgery is the standard of care for primary renal cell carcinoma (RCC), many patients in this population have comorbidities that may preclude them from having the necessary procedure.
The International Radiosurgery Oncology Consortium for Kidney (IROCK) will collect high quality, prospective data from patients who undergo stereotactic ablative radiotherapy (SABR) for primary RCC. The primary purpose of the IROCK registry is to evaluate oncological outcomes after delivery of SABR to primary kidney cancer. This will assist oncologists and future patients make evidence-based decisions about treatment options. Findings may also change the standard of care of patients for patients with RCC. The IROCK registry collects information about patient characteristics and medical history; clinical data relating to cancer diagnosis and staging; renal score and function; details of the SABR treatment administered; organ at risk and toxicity information; patterns of failure data and documentation of endpoints. Follow-up data is collected every 6 months after SABR.
The registry will also document novel combinations of systemic targeted agents and/or immunotherapies to establish their ability to enhance the effectiveness of the SABR technique. Given the projected increase in RCC globally, a better understanding of treatment options is pressing. The potential of SABR as a suitable treatment option for RCC in several patient cohorts therefore warrants further research, making the collection of data via a high quality, international, prospective registry essential.
Results of the data analysis will be published in medical journals as appropriate
Nil
Nil
Victoria
- Peter Maccallum Cancer Centre
International
Canada
- Juravinski Cancer Centre & McMaster University
- London Regional Cancer Program
- McGill University
- Sunnybrook Health Sciences Centre & University of Toronto
- The Ottawa Hospital Cancer Centre
Germany
- Cyberknife Center, University of Munich Hospitals
Japan
- University of Yamanashi
Netherlands
- Amsterdam University Medical Centre
United States of America
- Beth Israel Deaconess Medical Center
- Case Comprehensive Cancer Center
- Geisinger Medical Center
- Penn State Health
- The Kidney Cancer Research Alliance (KCCure)
- University of Texas - Southwestern
- University of Washington
Nil
Rob Baker, Flinders Medical Centre, rob.baker@sa.gov.au
A collaborative project conducted to improve patient outcomes and foster and grow high quality research by the establishment and maintenance of a prospective database of cardiac surgical procedures performed in centres throughout Australia and New Zealand.
Vision: Empower all cardiac surgery team members to improve the understanding and practice of cardiopulmonary bypass to improve cardiac surgical patient outcomes.
Mission: Maintain and develop the Australian and New Zealand Collaborative Perfusion Registry for cardiac surgical procedures performed throughout Australia and New Zealand. Promote the reporting and understanding of the effect of cardiopulmonary bypass on patient outcomes through encouraging evidence based practices, quality assurance, quality improvement and research.
Aims:
- Cultivate and grow a non-identifiable data source to be known as the Australian and New Zealand Collaborative Perfusion Registry (ANZCPR)
- Encourage adoption of evidence based practices through the collection and reporting of data relevant to the practice of cardiopulmonary bypass
- Empower cardiac surgical team members through the utilisation of the data to understand clinical practice, provide a foundation for research, and to facilitate quality improvement and benchmarking.
Objectives: ANZCPR aims to empower cardiac surgical team members through the collection and reporting of data relevant to the practice of cardiopulmonary bypass. This will be achieved through the maintenance of a prospective data set on cardiac surgical procedures performed in multiple sites throughout Australia and New Zealand and through the collaborative network of perfusion and interested researchers, who share the commitment to cooperation and collaboration in the pursuit of excellence in perfusion.
- Reported in Annual Report
- Shared with clinicians
- Shared with hospital executive
- Feedback to contributing clinicians
- Reported to state/territory health departments
- Annual Perfusion Downunder Winter Meeting
Nil at this time, under review for inclusion
Nil at this time, under review for inclusion
New South Wales
- Westmead Hospital, Westmead
South Australia
- Ashford Hospital, Ashford
- Flinders Medical Centre, Bedford Park
- Flinders Private Hospital, Bedford Park
Tasmania
- Calvary Lenah Valley, Hobart
- Royal Hobart Hospital, Hobart
Victoria
- Alfred Hospital, Melbourne
- Cabrini Hospital, Malvern
New Zealand
- Auckland City Hospital, Auckland
Lola Sikora, Trauma Program Manager, Royal Perth Hospital, lola.sikora@health.wa.gov.au
The WA State Trauma Registry at Royal Perth Hospital (RPH) has been collecting data on trauma patients since August 1994 and the database now contains more than 110,000 trauma admissions. For the purposes of the Registry, trauma is defined as “an injury or wound resulting from an external force” (Miller and Keane, 1983).
The criteria for inclusion into the registry are:
- All trauma patients who present to RPH for treatment within 7 days of their date of trauma and who were hospitalised for greater than 24 hours at RPH.
- All trauma-related deaths at RPH regardless of hospital length of stay.
- Patients who have suffered the effects of poisoning and drug overdose are excluded from the registry.
The Registry population is divided into major and minor trauma admissions according to the Injury Severity Score (ISS). Major trauma admissions are those patients who have an ISS of greater than 15. An extensive dataset is collected on these patients, from the time of trauma to discharge from RPH, including pre RPH treatment.
Minor trauma admissions are those patients who meet the registry inclusion criteria and have an ISS of less than 16. A limited dataset is collected on these patients.
From January 2017, a moderate dataset on patients with an ISS >12 and <16 is now collected, in order to meet the reporting requirements of the Australian Trauma Registry.
- Reported in Annual Report
- Shared with clinicians
- Shared with hospital executive
- Injury prevention reports
Nil
Nil
Western Australia
- Fiona Stanley Hospital
- Joondalup Health Campus
- Perth Children's Hospital
- Royal Perth Hospital
- Sir Charles Gairdner Hospital
- St John of God Midland Hospital
An automated data collection process utilising administrative (ICD-10) data will soon be implemented in order to capture all Western Australian trauma admissions that do not attend hospitals participating in trauma registries.
Alberta Hoi, Monash University, Alberta.hoi@monash.edu
Systemic Lupus Erythematosus (SLE) is a heterogeneous, systemic, autoimmune condition, typically associated with autoimmunity to nuclear antigens. The predominant population affected are women of child-bearing potential, though children, older females and males are also affected. SLE patients experience increased morbidity and mortality due to their disease and the side effects of available treatment options including corticosteroids and immunosuppressive treatments.
The Australian Lupus Registry and Biobank (ALRB) is a disease registry and decentralised biobank that aims to provide a platform for lupus specialists and researchers to collaborate in the collection of clinical data and tissue from SLE patients in Australia and carry out associated studies to further understand the pathogenesis and impact of SLE, including studies assessing health outcomes and quality of care.
The comprehensive data collection includes baseline information on patient demographics, serology, SLE classification criteria and comorbidites; routine disease monitoring information including medications, medical test results and SLE disease activity; and, annual monitoring of outcomes including medical events of interest, damage accrual and health-related quality of life.
Biospecimens collected include whole blood for DNA extraction, Paxgene-stabilised whole blood for RNA analyses and serum samples for protein expression studies. Fresh blood collections of up to 60 mL of blood at any one time point are also possible for ethically-approved studies.
- Feedback to contributing clinicians
- Publications in medical journals
Adult patients:
- SF (Short Form)-36v2 Health Survey
- Multi-dimensional Health Assessment Questionnaire
- Work Productivity and Activity Impairment Questionnaire
- Lupus Impact Tracker
Paediatric patients:
- Pediatric Quality of Life Inventory (Core and Rheumatology Modules)
Nil
Australian Capital Territory
- Canberra Hospital
New South Wales
- Liverpool Hospital
- North Shore Hospital
Northern Territory
- Royal Darwin Hospital
- Royal Alice Springs Hospital
Queensland
- Redcliffe Hospital
- Royal Brisbane & Women's Hospital
South Australia
- Flinders Medical Centre
- The Queen Elizabeth Hospital
- The Royal Adelaide Hospital
Victoria
- Austin Health - Austin Hospital
- Monash Children's Hospital
- Monash Medical Centre - Clayton Campus
- Royal Melbourne Hospital - City Campus
- St Vincent's Hospital (Melbourne) Ltd