The protocol of a clinical quality registry for dementia and mild cognitive impairment (MCI): the Australian dementia network (ADNeT) Registry

Abstract

Background Dementia was identified as a priority area for the development of a Clinical Quality Registry (CQR) in Australia in 2016. The Australian Dementia Network (ADNeT) Registry is being established as part of the ADNeT initiative, with the primary objective of collecting data to monitor and enhance the quality of care and patient outcomes for people diagnosed with either dementia or Mild Cognitive Impairment (MCI). A secondary aim is to facilitate the recruitment of participants into dementia research and trials. This paper describes the Registry protocol. Methods The ADNeT Registry is a prospective CQR of patients newly diagnosed with either dementia or MCI. Eligible patients will be identified initially from memory clinics and individual medical specialists (e.g., geriatricians, psychiatrists and neurologists) involved in the diagnosis of dementia. Participants will be recruited using either an opt-out approach or waiver of consent based on three key determinants (capacity, person responsible, and communication of diagnosis). Data will be collected from four sources: participating sites, registry participants, carers, and linkage with administrative datasets. It is anticipated that the Registry will recruit approximately 10,000 participants by the end of 2023. The ADNeT registry will be developed and implemented to comply with the national operating principles for CQRs and governed by the ADNeT Registry Steering Committee. Discussion The ADNeT Registry will provide important data on current clinical practice in the diagnosis, treatment and care of people with dementia and MCI in Australia as well as long-term outcomes among these people. These data will help to identify variations in clinical practice and patient outcomes and reasons underlying these variations, which in turn, will inform the development of interventions to improve care and outcomes for people with dementia and MCI.

Characterising Australian memory clinics: current practice and service needs informing national service guidelines

“…Third, the use of survey methods offers only approximate gauges of practice and does not produce data equivalent to electronic health records or national Medicare data extracts. With the release of the National Memory Clinic Service Guidelines [ 56 ], plans are underway to conduct an in-depth audit of clinics, and to align the Guidelines with the ADNeT Clinical Quality Registry [ 57 ]. Finally, it is important to note that this survey probed a number of topics that were considered important to develop National Memory Clinic Service Guidelines.…”

A new one‐stop interdisciplinary cognitive clinic model tackles rural health inequality and halves the time to diagnosis: Benchmarked against a national dementia registry

“…The Clinic is part of the ADNeT Registry, a national clinical quality registry for people newly diagnosed with dementia or MCI 22 ; the primary aim is to collect data to monitor and enhance quality of care and patient outcomes. We upload demographic and clinical data of eligible patients, unless a patient opts out, to the Registry via a secure online platform.…”

Gaining consensus on clinical quality outcomes for eating disorders: Framework for the development of an Australian national minimum dataset

“… 27–32 Example mechanisms for the collection of data include minimum datasets, such as the Primary Mental Healthcare Minimum Dataset and the National Bowel Cancer Screening Programme National Best Endeavours Dataset, 33 and population or disease-based registries. Population and disease-based registries exist for many major illness groups, including dementia, 34 prostate cancer, 35 HIV 36 and palliative care. 37 In 2016, the Australian Commission on Safety and Quality in Healthcare identified mental disorders in their prioritised list of clinical domains for Clinical Quality Registry development.…”