The Australia and New Zealand Sarcoma Association (ANZSA) supports sarcoma data collection at six major sarcoma referral centres around Australia through the ACCORD sarcoma database.

Data collection was initiated as a pilot in 2009, firstly at Peter MaCallum Cancer Centre, and subsequently expanded to include additional sites. Each hospital has HREC approval in place for ongoing data collection for research purposes and only custodians of ethically approved studies can access de-identified data. Single-site and multi-site audits and patterns of care studies have been conducted and ANZSA produces six-monthly data reports and encourages the engagement of sarcoma researchers in utilising the sarcoma registry. 

Thrombotic Microangiopathies (TMAs) are characterised by platelet aggregation within small blood vessels. This consumes platelets (causing thrombocytopenia), and the damaged/narrowed vessels cause mechanical destruction of red blood cells (microangiopathic haemolytic anaemia). The consequent disruption to blood flow within small vessels leads to end organ damage/dysfunction (e.g. kidney failure or stroke). Thrombotic microangiopathies can occur as a result of a variety of inherited and acquired conditions, and are now seen (and recognised) more commonly, particularly as they can occur as a result of new medications, such as some of the newer anti-cancer agents. 

Thrombotic thrombocytopenic purpura (TTP) is long recognised as a TMA affecting primarily the central nervous system and kidneys. TTP is a rare, life threatening disorder that had an almost universally fatal outcome till the introduction of plasmapheresis in the late 1980s and early 1990s. Haemolytic Uraemic Syndrome (HUS) is another rare TMA often preceded by a diarrhoeal illness caused by Shiga toxin-producing organisms (especially Escherichia coli (STEC) or Shigella bacteria). Atypical HUS (aHUS) has been used to encompass a group of TMAs that are neither TTP or HUS, and which are most commonly associated with acquired or inherited defects in the complement pathway or complement regulatory proteins.

The relative rarity of the individual types of TMA is a barrier to accrual of data and material to support scientific studies and randomised clinical trials. A national registry for all Australian patients with TMA provides an important community resource.

The aims of the TMA Registry are to:

• Determine the incidence, natural history, specific clinical characteristics, and clinical outcome of patients with TMAs, particularly TTP, HUS and aHUS
• Provide information on the range of therapies employed in the treatment of TMA patients
• Explore factors influencing clinical outcomes
• Help define optimal management of patients with TTP and HUS
• Inform and inspire future hypothesis-driven research in this area

The TMA Registry is a register of patients who develop TTP or HUS in any clinical setting. Clinical data collection is undertaken by clinicians in specialist units at participating hospitals.  Data management and analysis is undertaken by the Department of Epidemiology and Preventive Medicine (DEPM), Monash University and interpreted with the input of specialist clinicians on the steering committee.

The Australian and New Zealand Massive Transfusion Registry (ANZ-MTR) Clinical Dataset brings together data from multiple sources and analyses and reports contemporary information on transfusion practice and patient outcomes following critical bleeding (CB) and massive transfusion (MT) (defined as ≤ 5 RBC units in any 4 hour period during hospital admission) in all clinical settings, including surgery, trauma, obstetrics and gastrointestinal bleeding.  Data on more than 9,200 adult (≤ 18 years) patients from 29 participating sites have already been collected, analysed and the results shared with participants via site reports, presentations and publications.

The ANZ-MTR’s unique and valuable dataset, available to inform policy development and practice improvement, is being transitioned from primarily a research tool to a sustainable operational model to align with Australia’s national safety and quality framework, whilst facilitating research.

ANZ-MTR data are already linked with the Australian and New Zealand National Death Indexes and linkages with other registries (e.g. intensive care, cardiothoracic surgery, trauma, maternity outcomes) to provide expanded data for more sensitive outcome measurement is in progress. 

The ANZ-MTR uses electronic data extraction and data linkage methodologies. Clinical data from hospital data sources, including Laboratory Information Systems (for transfusion history and laboratory results) and Health Information Services databases (for patient demographics and admission data), are electronically extracted by the participating hospitals. The data are then sent securely to the ANZ-MTR, located at Monash University, where the separate information system data are linked to enable detailed analyses that otherwise would not be easily possible.

The Australia and New Zealand Liver and Intestinal Transplant Registry (ANZLITR) is a collaborative effort of the liver transplantation units in Australia (Adelaide, Brisbane, Melbourne, Perth, Sydney) and New Zealand (Auckland).

Purpose/aims: Collect, store, analyse and report on activity and outcomes using information about all liver and intestinal transplants across Australia and New Zealand. Support approved research projects wishing to utilise de-identified ANZLITR data.

Population: All participants that are wait-listed and those that receive a liver and/or intestinal transplant. All participants that are living liver donors (who donate a part of their liver).

Outcomes measures: Waiting list activity and transplantation activity are reported by various factors including:

• Participant age, age group and age strata
• Paediatric weight
• Era of transplant (5 yearly groups)
• Donor type (deceased/living)
• Graft type (whole/split/reduced)
• Graft number (participants may be retransplanted if the first graft fails)
• Graft survival time
• Primary disease
• Indications for retransplantation (graft failure)
• Causes of death 
• Patient survival time

The VCOR is a Clinical Quality Registry collecting data on selecting cardiac procedures such as percutaneous coronary intervention (PCI). VCORs mandate is to undertake analyses of collective hospital data to produce meaningful reports for hospitals based on clinically relevant quality indicators. For PCI this allows hospitals to benchmark themselves and assess their performance on a quarterly and annual basis, with all hospitals who undertake PCI in the state of Victoria contributing all cases. Selected hospitals contribute to the data collection for cardiac implantable electronic devices (CIED's), with 6 monthly annual reports provided. 

VCORs aims include:

1. Benchmarking outcomes to stimulate improvement in patient care
2. Identifying areas of excellence as well as opportunities for improvement across the entire system of care
3. Providing an impetus for maximising performance
4. Applying relevant, emerging best practice principles and share knowledge
5. Accounting for individual and cohort-related risk factors when assessing outcomes
6. Providing insight into the medium and long-term safety of cardiac devices, treatments and procedures
7. Identifying geographical or socioeconomic disparity in care.

The outcomes measured and reported for PIC include:

• In-hospital and 30-day Mortality 
• In-hospital and 30-day Unplanned revascularisation
• In-house Major Bleeding
• 30-day Major Adverse Cardiac and Cerebrovascular Events
• Risk Adjusted 30 Day Mortality (reported annually)
• Door To Balloon Time (for Primary PCI STEMI cases)
• Length of hospital stay

VCOR undertakes a rigorous, independent audit program for PCI.

The Australasian Myositis Registry (‘Myositis Registry’) is a multi-centre, international, longitudinal, observational program for patients with myositis that has been designed to track the natural history and progression of the disease and patient outcomes.

The benefits of the Myositis Registry are twofold: for clinicians and researchers, the Myositis Registry will provide an important tool for novel insights into disease mechanisms, diagnostic tools and identify potential treatments and targets for therapies; and for patients the Myositis Registry will offer an opportunity to take an active role in their clinical care via a ‘Patient Portal’, which allows the patient to access their data and monitor their condition.

The Myositis Registry also provides a research feasibility and recruitment facility, as the database population can be analysed to identify potential research candidates and determine study feasibility within disease sub-groups, including for studies with extensive phenotype inclusion criteria. Potential research participants can be notified of research opportunities without their confidentiality being compromised, allowing the patient to make informed choices regarding research participation.

In 2016–2017, 2.34 million anaesthetics were performed for day surgery procedures in Australia. Currently there is no established method to determine the quality of recovery in these patients, hence we do not know which patients experience suboptimal outcomes. This evidence gap has implications for patient care, and quality improvement initiatives at clinician, hospital and state levels.

DayCOR is a software system which collects, alerts, manages and analyses patient demographic and patient-reported data. A survey link is automatically sent to patients via SMS and email 24 hours after discharge, with a reminder at 48 hours. Clicking the link opens their web-based survey. After a short introduction, patients opt in to a 15-question review consisting of clinical, process and patient experience questions.

The aims of this registry:

1. Collect patient-reported outcomes after anaesthesia for day surgery
2. Alert anaesthetists and nurses to post-discharge adverse events after anaesthesia for day surgery
3. Report de-identified data to clinicians, hospital/day facility (‘site’) management and other stakeholders.

The target population is all admitted patients who undergo anaesthesia or sedation for day surgery.

Clinical outcomes are degree of pain, nausea/vomiting, sleep quality, confusion, falls, ability to return to usual activities; process outcomes are analgesia and antiemetic availability and effectiveness, adherence to postoperative and medication instructions, requirement for post-discharge medical contact; patient experience outcomes are positive and negative hospital experiences, and suggestions to improve health care. Any concerning responses such as pain or prolonged vomiting are automatically emailed to the treating anaesthetist and site administrator.