356 Registry Australia
Placido Teofilo
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Introduction: Lung cancer is the leading cause of cancer mortality, comprising the largest national cancer disease burden in Australia and New Zealand. Regional reports identify substantial evidence-practice gaps, unwarranted variation from best practice, and variation in processes and outcomes of care between treating centres. The Australia and New Zealand Lung Cancer Registry (ANZLCR) will be developed as a Clinical Quality Registry to monitor the safety, quality and effectiveness of lung cancer care in Australia and New Zealand.
Methods and analysis: Patient participants will include all adults >18 years of age with a new diagnosis of non-small-cell lung cancer (NSCLC), SCLC, thymoma or mesothelioma. The ANZLCR will register confirmed diagnoses using opt-out consent. Data will address key patient, disease, management processes and outcomes reported as clinical quality indicators. Electronic data collection facilitated by local data collectors and local, state and federal data linkage will enhance completeness and accuracy. Data will be stored and maintained in a secure web-based data platform overseen by registry management. Central governance with binational representation from consumers, patients and carers, governance, administration, health department, health policy bodies, university research and healthcare workers will provide project oversight.
Ethics and dissemination: The ANZLCR has received national ethics approval under the National Mutual Acceptance scheme. Data will be routinely reported to participating sites describing performance against measures of agreed best practice and nationally to stakeholders including federal, state and territory departments of health. Local, regional and (bi)national benchmarks, augmented with online dashboard indicator reporting will enable local targeting of quality improvement efforts.
Clinical quality registries (CQRs) systematically measure and monitor the quality of healthcare by collecting, analysing and reporting health related information within a specific clinical domain. CQRs have been developed for many different health conditions in Australia, such as stroke, cancer and hip fracture, and have been proven to be powerful tools for reducing variation in clinical practice and improving healthcare quality. General information about clinical quality registries is available here.
The Australian Dementia Network Registry (ADNeT Registry, or the Registry) involves memory clinics and dementia diagnostic services across Australia. Ultimately, the ADNeT Registry will incorporate all diagnostic settings and services for dementia and mild cognitive impairment in Australia and register the entire population of persons newly diagnosed with either dementia or mild cognitive impairment. In doing so, the Registry will systematically drive improvements in the quality of care and patient outcomes.
The Australian Dementia Network Registry (ADNeT Registry, or the Registry) is a clinical quality registry for individuals newly diagnosed with either dementia or mild cognitive impairment. The Registry gathers and analyses health and care information to better understand what is working well and what needs to be changed to provide the best quality of clinical care and services.
The Registry is managed by Monash University. Read the latest ADNeT Registry 2020-2023 Status Report which summarises key characteristics of Registry participants recruited between 2020-2023.
The ADNeT Registry collects clinical data from participating sites to benchmark clinical practice in the diagnosis, management and care of people with either dementia or mild cognitive impairment. In addition, the ADNeT Registry collects information from Registry participants and their caregiver to incorporate the voice of people living with either dementia or mild cognitive impairment and their care partner.
The ADNeT Registry also conducts data linkage with information routinely collected by various government bodies to understand variation in long-term outcomes, such as hospitalisations, entry into residential care, and use of medications. This data helps improve the care provided to dementia and mild cognitive impairment and care partner. It also informs health policy and service planning for this group of people.
Sites contributing to the ADNeT Registry benefit from their participation as they are able to benchmark their practice and service provision against other participating sites. This helps them gain a better understanding of their clinical population and practice and inform quality improvement initiatives.
By the end of 2023, we hope that most memory clinics across Australia will be participating in the ADNeT Registry.
We are also planning to expand to other diagnostic settings, including specialist and primary care.
The ADNeT Registry has great potential to improve quality of care provided to people with dementia or mild cognitive impairment in Australia, as well as enhance research opportunities for both consumers and researchers. In the future, when new therapies for dementia become available, the ADNeT Registry will be essential in ensuring that uptake is appropriate and equitable and longer-term outcomes can be assessed.
We acknowledge the Traditional Owners of country throughout Australia and recognise their continuing connection to land, waters and culture. We pay our respects to their Elders past, present and emerging.
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This database helps to inform cancer service planning and health policy, as well supports evaluation of prevention activities and local screening services such as the Cervix Screening Program and BreastScreen SA.
The South Australian Cancer Registry has been collecting data about cancer since 1977. This continuous monitoring provides a rich database to support identification of changes in cancer incidence patterns over time, and allows for prompt response to public concerns about clusters of cancer or regional evaluations when required.
The South Australian Clinical Cancer Registry also operates within South Australia, complementing the data collected by the South Australian Cancer Registry. The clinical cancer registry consists of four hospital based clinical cancer registries and supports the collection of detailed data from clinicians across the state such as cancer stage, grade and treatment course.
Cancer is a notifiable disease in all Australian states and territories. The relevant legislation requires certain individuals and organisations to notify all new cases of cancer to the jurisdiction's central cancer registry. These registries supply data annually to the Australian Institute of Health and Welfare (AIHW), which cleans and standardises the data, notifies the registries of inter-state duplicates and produces the Australian Cancer Database.
8. It is desirable that Primary Registries participate in the development of the International Standards for Clinical Trial Registries. Does the Registry agree to participate in the development of these standards?
Yes
14. It is desirable that the WHO Trial Registration Data Set be available in the language/s of the countries served by the registry. Please indicate the languages in which the registered information is displayed.
English
After submission of a trial registration request, the ANZCTR staff assess the accuracy and validity of the data submitted by checking the information supplied against the standards required for the 24 items TRDS. If information appears missing, inconsistent or obviously inaccurate, the data are queried with the Registrant via email. Registrants are required to make the required changes themselves online and re-submit the trial. Once the trial submission fulfils the 24 item TRDS requirements, the trial is registered by the ANZCTR staff, after which a registration number and date are automatically generated and the trial is publicly displayed on the ANZCTR website.
17. Does the Registry agree to facilitate the retrospective linking (or bridging) on the WHO Search Portal of a single trial registered with more than one registry by encouraging Responsible Registrants to enter secondary identifiers, including the UTN?
Yes
18. Does the Registry agree, as part of the registration process, to search the WHO Search Portal to ascertain if the trial has already been registered on another WHO Primary Registry?
Yes
27. Should the register cease to function, does the register agree that at least the WHO Trial Registration Data Set for all trial records will be transferred to a WHO Primary Register?
Yes
28. It is desirable that Primary Registries have a strategy in place addressing the medium to long term sustainability of the registry. Does the Registry have such a strategy in place?
Yes