This registry has been developed to collect prospective data regarding outcomes following cardiac catheterisation in Australia and New Zealand. The goal of the registry is to use the comprehensive data collected to evaluate performance and identify areas for improvement.

ANZIPTR is based at Westmead Hospital in NSW, Australia. The Registry operates at Westmead Hospital under contract from the Australian Organ and Tissue Authority. The registry is responsible for recording and maintaining data about the islet and pancreas transplants performed in Australia and New Zealand. Information about donors and recipients of pancreas and islets transplants is collected by the registry from the participating units and stored in a secured database.

The CHOPAN registry aims to collect real-time data on pregnant women who are infected with the coronavirus that causes COVID-19 (SARS-CoV2) to improve our understanding of its impact on pregnancy  and neonatal outcomes. This registry will provide regular feedback to clinicians and public health officials to allow evidence-based management of women and their babies with coronavirus infection.

This registry was developed by Australian clinicians in collaboration with international colleagues in order to maximise its value to the global community.

The aims of the registry are to:

1. Describe the presentation and clinical course of coronavirus infection in pregnant women
2. Assess obstetric, perinatal and neonatal outcomes after coronavirus infection
3. Describe modes of transmission, including any cases of mother-to-child transmission
4. Identify any factors that influence disease outcome for mother and baby including: timing and mode of delivery, breastfeeding, rooming-in/separation, the use of anti-viral treatments and supportive therapies
5. Facilitate international collaborative efforts to improve care of women exposed to novel and emergent pathogens.

The VACAR is a clinical quality registry of all out-of-hospital cardiac arrest (OHCA) events in Victoria. The registry captures a comprehensive ‘roadside to recovery’ perspective of the OHCA patient, capturing over 150 data elements across the prehospital, hospital, and recovery journey. It is used extensively to improve systems-of-care for OHCA patients in Victoria and has been recognised internationally for its contribution to the evidence-base in resuscitation science.

Registry data is collected from Triple Zero calls, Communication Centre dispatch records, Emergency Medical Services (EMS) patient care records, real-time CPR quality data from defibrillators, hospital medical records and from telephone interview of adult survivors at 12 months post-arrest. Hospital outcome data is supplemented by death records from the Victorian Registry of Births, Deaths and Marriages. The registry also collects information relating to the causes of death for OHCA patients from the National Coronial Information System (NCIS). Data for all OHCA patients attended by AV has been captured for over 120,000 patients since 1999. Data is collated in the registry based on an internationally agreed template for resuscitation registries (Utstein template).

VACAR provides information for the assessment and benchmarking of EMS performance in relation to the treatment and outcomes of OHCA patients. In particular, a number of key performance indicators (KPIs) have been implemented, which are designed to measure the quality and safety of care. KPIs include ambulance response times, rate of successful defibrillation, CPR quality metrics (various), prehospital return of spontaneous circulation, event survival and survival to hospital discharge.

This registry was set up in 2015. The aim was to establish a longitudinal clinical registry with initial retrospective ascertainment of cases for the preceding 22 years (1993 to 2015) and ongoing prospective ascertainment of all children with a Neural Tube Defect (NTD) or Sacral Agenesis (SA) who attend the Spina Bifida/Neural Tube Defect clinic at The Royal Children’s Hospital, Melbourne.

It is hoped the other site in Victoria caring for children with this condition, (Monash Children's Hospital) will join the registry and then the rest of Australia in order to determine current practices ,therapies with the hope that longitudinal outcomes may inform future practice.

The ASR will tell us about:

• The frequency of spine surgery in our community;
• The usefulness, safety and results of different surgical approaches and different implantable devices;
• The factors that predict favourable and unfavourable surgical outcomes in both the short and longer term;
• The variety of care provided for people undergoing spine surgery in our community, and how it compares to best practice internationally.

The aim of this project is to develop the pilot of a population-based spine surgery clinical registry to optimise quality of care provided to individuals undergoing spine surgery.

The study population will include any person over the age of 18 undergoing elective surgery that involves the spine. 

Patient reported outcome measures (PROMs) specific to quality of life (The 3 Level EQ5D™)and pain and disability questionnaires are used (The Oswestry Disability Index (ODI) for low back pain and the Neck Disability Index (NDI) for acute or chronic disability of the neck).

The ALLG NBCR is a national registry collecting clinically annotated data and biospecimens from a patient with a haematological malignancy with a focus on AML, ALL, UL and MDS. Treatment and clinical outcome data are collected for patients and the Australasian haematology community of ALLG members utilise data to inform practice, consider clinical trial inclusion, and to conduct research.

The National Cardiac Registry (NCR) is a clinical quality registry that collects information on patients receiving treatment for cardiac conditions via state/territory-based cardiac registries. The purpose of the NCR is to document outcome variance and opportunities for excellence in the quality of cardiac health care across Australia. In 2021 data collection commenced across number of state/territories and as it matures the following objectives will be realised.

Objectives:

1. Use a collaborative, federated model for effective engagement, participation and support from stakeholders
2. Provide a platform to receive State and Territory data and measure performance as determined by agreed quality indicators
3. Transparently report on clinical, procedural and patient outcomes to clinicians, hospitals, government and community
4. Provide national benchmarking of key quality performance measures for cardiac conditions/procedures/devices and secondary prevention

The NCR will be rolled out in modules, each covering different areas of cardiac healthcare. The first module covers Percutaneous coronary intervention (PCI).

The quality indicators for PCI are:

1. Time from diagnostic electrocardiogram to PCI mediated reperfusion
2. Time from door to PCI mediated reperfusion
3. Peri-PCI stroke
4. In hospital major bleeding
5. In hospital mortality
6. 30-day unplanned cardiac readmission rate after PCI
7. Unplanned revascularisation within 30 days
8. 30-day mortality after PCI
9. Patients without contraindication discharged on lipid-lowering therapy
10. Patients referred to cardiac rehabilitation or other secondary prevention program
11. Proportion of patients without a clear and documented contraindication for Aspirin and/or a P2Y12 inhibitor, discharged on DAPT

The Australasian Pelvic Floor Procedure Registry (APFPR) is a clinician-led national clinical quality registry.  The APFPR commenced operations early in 2021 with the stress urinary incontinence (SUI) mesh procedure module and is recruiting patients from participating hospitals.



The pelvic organ prolapse (POP) mesh procedure module is expected to be rolled out in early 2022. Both clinician and patient reported outcomes are collected by the registry. The registry has been set up to increase the safety of procedures that utilse medical devices such as pelvic mesh and monitor quality of care.

The APFPR will collect data relating to pelvic floor disorder diagnosis, surgery details and intra and post operative complications of implantation, revision and explantation procedures.  Additional data items will be collected for risk adjustment purposes.

The Upper Gastrointestinal Cancer Registry (UGICR) is a clinical quality registry that monitors the quality of care provided to Australians diagnosed with upper gastrointestinal cancers.



The UGICR was established in 2015 and is managed by the Cancer Research Program, within the School of Public Health and Preventive Medicine at Monash University. The School has extensive experience in the establishment and management of clinical registries and is considered a centre of excellence in clinical registry science.



The primary liver module of the UGICR aims to identify unwarranted variation in treatment and outcomes for people with newly diagnosed cancer arising from the liver, and provide timely risk-adjusted benchmarked reports of quality of care to participating hospitals.

The Upper Gastrointestinal Cancer Registry (UGICR) is a clinical quality registry that monitors the quality of care provided to Australians diagnosed with upper gastrointestinal cancers.

The UGICR was established in 2015 and is managed by the Cancer Research Program, within the School of Public Health and Preventive Medicine at Monash University. The School has extensive experience in the establishment and management of clinical registries and is considered a centre of excellence in clinical registry science.



The biliary module of the UGICR aims to identify unwarranted variation in treatment and outcomes for people with newly diagnosed cancer arising from the bile ducts or gallbladder, and provide timely risk-adjusted benchmarked reports of quality of care to participating hospitals.

The Upper Gastrointestinal Cancer Registry (UGICR) is a clinical quality registry that monitors the quality of care provided to Australians diagnosed with upper gastrointestinal cancers.

The UGICR was established in 2015 and is managed by the Cancer Research Program, within the School of Public Health and Preventive Medicine at Monash University. The School has extensive experience in the establishment and management of clinical registries and is considered a centre of excellence in clinical registry science.

The oesophagogastric module of the UGICR aims to identify unwarranted variation in treatment and outcomes for people with newly diagnosed cancer arising from the oesophagus and stomach, and provide timely risk-adjusted benchmarked reports of quality of care to participating hospitals.

The Upper Gastrointestinal Cancer Registry (UGICR) is a clinical quality registry that monitors the quality of care provided to Australians diagnosed with upper gastrointestinal cancers.



The UGICR was established in 2015 and is managed by the Cancer Research Program, within the School of Public Health and Preventive Medicine at Monash University. The School has extensive experience in the establishment and management of clinical registries and is considered a centre of excellence in clinical registry science.



The pancreatic module of the UGICR aims to identify unwarranted variation in treatment and outcomes for people with newly diagnosed cancer arising from the pancreas, and provide timely risk-adjusted benchmarked reports of quality of care to participating hospitals.

The primary purpose of the Shunt Registry is to systematically collect information related to the use of cerebrospinal (CSF) shunts to guide best clinical practices, processes and improve health outcomes for patients with CSF shunts. Any hospital throughout Australasia where cerebrospinal fluid (CSF) shunt surgery is performed is eligible to contribute data to the Shunt Registry & nbsp; Any patient undergoing a CSF shunt related procedure in an ethics approved site is eligible to contribute data to the Shunt Registry. There are no additional inclusion or exclusion criteria.

The Shunt Registry key objectives are to:

• Enable determination of the current indications, frequency and outcomes of CSF shunt related procedures;
• Enable measurement of CSF shunt longevity and device failure rates with benchmarking of CSF shunt component performance;
• Enable early identification of particular CSF shunt components associated with unexpectedly high failure rates;
• Measure the quality and safety of care to form benchmarking of outcomes between de- identified individuals and neurosurgical units in order to improve the quality of clinical care;
• Mitigate risk by using Shunt Registry data to rebut any inaccurate information published about the safety of CSF shunts;
• Provide an opportunity to study methods of improving the performance and outcomes of CSF shunts and their components through research projects;
• Provide a central repository of potentially re-identifiable information to allow rapid provision of accurate information to the neurosurgeon if the need arises
• Provide the neurosurgeon access to device information if a patient has an emergency need for neurosurgical care.

A normal heart comprises two pumping chambers called ventricles. Being born with a single ventricle is one of the most severe conditions in newborns with projected mortality of 25-40% within the first 4 years of life. A series of operations provide a lifeline to these patients. The last of these is the Fontan procedure; a procedure performed at around 4 years of age, that connects the veins directly to the pulmonary arteries.

It was long believed that these surgeries would not result in long-lasting survival, however, under the leadership of the Australian and New Zealand Fontan Registry (ANZ Fontan Registry), it has now been demonstrated that survival 35 years after Fontan will reach 85%. The ANZ Fontan Registry is the largest database of patients surviving with a single ventricle and the only population-based registry of Fontan patients’ data. It aims to facilitate a greater understanding of these patients’ short and long term health outcomes, as well as factors which can be modified to improve their health and wellbeing. Being the largest registry of its kind, and with strong partnerships between multiple sites throughout Australia and New Zealand, the ANZ Fontan Registry enables high-quality research (including clinical trials) to be conducted in order to optimise and  standardise care for this population.

The aim of the SOHO registry is to collect patient reported outcome measures (PROMs) amongst children with paediatric orthopaedic conditions attending The Children's Hospital at Westmead. The outcome measures collected are tailored to the individual orthopaedic diagnoses. Currently included diagnoses are:

• Idiopathic Scoliosis
• Early-Onset Scoliosis
• Syndrome or Neuromuscular-related Scoliosis
• Charcot Marie Tooth disease
• Congenital Talipes Equinovarus
• Tarsal Coalition
• Lateral column lengthening
• Pes Cavus correction
• Anterior Cruciate Ligament Rupture
• Mensicus Tear, Osteochondritis Dissecans
• Discoid Mensicus
• Patella Dislocation
• Hereditary Multiple Osteochondramata
• Bone and Soft Tissue Tumous
• Leg Lengthening
• Perthes Disease
• Muccopolysacchariodosis and shoulder instability.  

PROMs are completed at baseline, 6 and 12 months and then on an annual basis ongoing.

The Bowel Cancer Outcomes Registry (BCOR) is a Clinical Quality Registry established by the Colorectal Surgical Society of Australia and New Zealand (CSSANZ). It was started as a clinical audit and is a surgeon-led surgical audit applicable to all surgeons who perform colorectal cancer surgery.

The BCOR is governed by a collaboration of invested parties (CSSANZ, RACS, NZAGS, GSA, and consumers) and contains over 43,000 treatment episodes.

BCOR data is used for clinical audit of the surgical practices of Australian and New Zealand surgeons for the purpose of quality assurance. The audit also works towards creating a large dataset containing Australian and New Zealand data that can be used for research and quality improvement purposes, with the aim of advancing knowledge and understanding of treatment for colorectal cancer. By creating this dataset BCOR will be able to identify areas pertinent to patient safety, identify benchmarks and identify sites that may be performing outside the common bounds of the larger group.

Patients 18 years or older undergoing resection or treatment for colorectal cancer are recruited by surgeons at participating public and/or private hospitals in each Australian Jurisdiction and New Zealand via an opt out consent approach.

BCOR collects information on patient and tumour characteristics, colorectal cancer management, complications of treatment, and clinical quality indicators relating to quality of surgical and hospital care.

The Perth Hip and Knee Research Registry is designed to prospectively capture data to allow comparisons in techniques of undertaking hip and knee arthroplasty (joint replacement) surgery. This will look at methods of performing the surgery including the use of advanced technology and robotics as well as methods of individualising position of implants during surgery.

All patients undergoing hip or knee replacement surgery at Perth Hip and Knee Clinic will be eligible for inclusion.

Patient demographics, intra-operative measurements and data, post-operative patient reported outcome measures, clinical assessment and patient satisfaction will be measured as will radiographic analysis undertaken as routine of care.