The Australia Dementia Network Clinical Quality Registry

Clinical Quality Registries systematically measure and monitor the quality of healthcare by collecting, analysing and reporting health related information within a specific clinical domain. Clinical Quality Registries 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.

Dementia was identified as a priority area for developing a Clinical Quality Registry by the Australian Commission for Safety and Quality in Healthcare in 2016.

Internationally, Clinical Quality Registries for dementia have been found to facilitate better diagnosis, management, and care for people with dementia as well as improvement in carer support.

Australian Dementia Network Registry

The Australian Dementia Network Registry is currently being piloted in memory clinics and dementia diagnostic services across Australia. Ultimately, the Australian Dementia Network 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 ADNeT Registry will collect 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 will collect 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 will also conduct 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. It is anticipated that this data will help improve the care provided to dementia and mild cognitive impairment and care partner. It will also inform health policy and service planning for this group of people.

The ADNeT Registry will also help to connect interested Registry participants to research, such as the ADNeT Screens and Trials.

Sites contributing to the ADNeT Registry will benefit from their participation as they will be able to benchmark their practice and service provision against other participating sites. This will help them to gain a better understanding of their clinical population and practice and inform quality improvement initiatives.

An annual report will be published and freely accessible via this website, to provide an overview of registry coverage, participation and key data on the quality of care using ‘clinical quality indicators’. These are specifically defined and measurable items which provide an indication of quality of care.

Key achievements so far:

  • The ADNeT Registry protocol has been developed and approved by the Alfred Hospital Human Research Ethics Committee under the National Mutual Acceptance Scheme (Project Number: 44037, Approval date: 27/08/2018).
  • A Modified Delphi Study has been completed which recommended a set of 18 potential Clinical Quality Indicators for the ADNeT Registry. Seven Clinical Quality Indicators have been endorsed by the ADNeT Registry Steering Committee.
  • Based on the endorsed Clinical Quality Indicators and key stakeholder consultation, a Baseline Minimum Dataset has been developed and implemented.
  • As of August 2020, we have received governance approval for 7 sites to participate in the ADNeT Registry. Of which, 2 sites have commenced data collection.
  • A systematic scoping review has been completed to explore what matters most to people living with dementia and identify potential patient outcome measures for the ADNeT Registry. A working group has been established to further develop a patient and carer survey that can be used in the ADNeT Registry to incorporate the voice of people living with either dementia or mild cognitive impairment and their carepartners.
  • A collaboration has been established with the Registry of Senior Australians (ROSA) which recruits persons at the time of an aged care assessment in South Australia to monitor the health, service utilisation, medication use and other outcomes of this group.

By 2023, we hope that most memory clinics across Australia will be participating in the ADNeT Registry, and 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, and enhance research opportunities for both consumers and researchers. Into the future, when new therapies for dementia become available, the Registry will be essential in ensuring that uptake is appropriate and equitable, and longer-term outcomes can be assessed.

For more information about the ADNeT Registry contact:

ADNeT Registry Program Manager
Email: ADNeT.Registry@monash.edu
Phone: 1800 314 421

General information about clinical quality registries is available here.