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ACSQHC-ARCR-248

Prioritised clinical domain
Dementia
Abbreviation
ADNeT Registry
Registry contact

Kasey Wallis, Monash University, adnet.registry@monash.edu

Year established
2020
Description

The Australian Dementia Network (ADNeT) Registry is a Clinical Quality Registry (CQR) (self-reported) for people diagnosed with either dementia or mild cognitive impairment (MCI). The aims of the registry are to:

  • Collect and analyse data to monitor and enhance the quality of care and patient outcomes for people diagnosed with either dementia or MCI in Australia
  • Facilitate the recruitment of participants into research projects.

Eligible patients are identified and recruited initially from specialist services (e.g. memory clinics) and individual medical specialists (e.g. geriatricians and neurologists) involved in the diagnosis of dementia. Data is collected from four sources: participating sites, registry participants, carers, and linkage with administrative datasets. 

The ADNeT Registry has been developed and implemented to comply with the national operating principles for CQRs and is governed by the ADNeT Registry Steering Committee.

The ADNeT Registry is part of Australian Dementia Network (ADNeT), a multi-institutional, Australia-wide consortium of dementia researchers and clinicians. The network was initially funded by the Boosting Dementia Research Initiative grant from the National Health and Medical Research Council’s National Institute for Dementia Research and philanthropic organisations. ADNeT received additional funding from the Department of Health and Aged Care for fiscal years 2024 to 2025. From 1 July 2023, the ADNeT Registry is also supported by funding from the Australian Government, Department of Health and Aged Care, under the National Clinical Quality Registry Program. 

Reporting process
  • Reported in Annual Report
  • Reported in other public reports
  • Shared with clinicians
  • Shared with consumers
  • Shared with hospital executive
  • Shared with medical colleges
  • Conference presentations, publication in peer-reviewed journals
Patient Reported Outcome Measures (PROMs)

The ADNeT Registry baseline participant and carer surveys included two patient/carer-reported outcome measure questions. The two questions were developed based on quality of life questions used in earlier studies. The participant and carer surveys underwent consumer consultation in late 2020 and data collection commenced in early 2021.

Patient Reported Experience Measures (PREMs)

The ADNeT Registry baseline participant and carer surveys include nine patient/carer-reported experience measure questions. Seven of these questions were developed based on experience questions used in earlier studies, and the remaining two were developed by the ADNeT Registry Survey Working Group. The participant and carer surveys underwent consumer consultation in late 2020 and data collection commenced in early 2021.

Participating sites

New South Wales

  • Burwood Specialists 
  • Central Coast Neurosciences (CCN) - Procognition Clinic
  • Dr Margaret Beazley, Geriatrician, practising at Geriatric Specialist Care
  • Dr Mark Hohenberg, Brellah Medical Group
  • Geriatric Medicine Services, Western NSW LHD
  • Hornsby Ku-ring-gai Memory Clinic, Hornsby Ku-ring-gai Hospital
  • Memory Assessment Program, Pottsville 
  • Murrumbidgee Local Health District Aged Care Outpatient Clinic, Wagga Wagga Base Hospital 
  • Northern Beaches Geriatricians
  • Prince of Wales Hospital Brodaty Clinic
  • Prince of Wales Hospital Cognitive Disorders Clinic
  • Prince of Wales Hospital Neuropsychiatry Clinic 
  • Rehabilitation and Aged Care (RACS) Outpatient Clinic, Mona Vale Hospital 
  • Shoalhaven Aged Care Service, Milton Hospital 
  • Shoalhaven Aged Care Service, Shoalhaven Hospital 
  • Southcare Geriatricians, Sutherland Hospital

Northern Territory 

  • Top End Memory Service

Queensland

  • Agenda Health
  • Beach Brain
  • Cairns Memory Clinic, Cairns Hospital 
  • Dementia Assessment Service, Kirwan Health 
  • Dr John Endacott, Geriatrician at Eden Hospital
  • Dr Logan, Geriatrician practising at Lakelands Medical Centre
  • Geriatric, Adult Rehabilitation and Stroke Services (GARSS) Memory Clinic
  • Healthy Ageing Gold Coast
  • Innisfail Memory Clinic, Innisfail Hospital 
  • Ipswich Health Plaza Memory and Geriatric Clinics, Ipswich Hospital
  • LifeSpan Specialists
  • Mareeba Memory Clinic, Mareeba Hospital 
  • Memory Clinic Princess Alexandra Hospital, Princess Alexandra Hospital
  • Memory Clinic Surgical, Treatment and Rehabilitation Services (STARS)
  • Neurosciences Queensland 
  • Princess Alexandra Hospital Geriatric Clinic
  • Redcliffe Hospital Memory Clinic, Redcliffe Hospital 
  • Robert Adam Neurology 
  • Robina Private Hospital - Memory Clinic, Robina Private Hospital
  • The Prince Charles Hospital Memory Clinic, The Prince Charles Hospital 
  • Your Brain in Mind

South Australia

  • Acacia-Fiori Geriatrics
  • Central Adelaide Local Health Network Department of Geriatrics and Rehabilitation Medicine
  • Flinders Medical Centre Memory and Aged Care Clinics 
  • Murray Bridge Soldiers' Memorial Hospital Geriatric Services
  • QE Specialist Centre, Prof R Visvanathan
  • Riverland General Hospital Geriatric Services
  • Royal Adelaide Hospital Memory Service 
  • Sensus Cognition 
  • Specialist Ambulatory Rehabilitation Centre (SpARC) Memory Clinic 
  • The Queen Elizabeth Hospital Memory Service

Tasmania

  • David Dunbabin Aged Care
  • Dr Krishna Kalpurath, Calvary Healthcare Sessional Rooms, Launceston 
  • Hazel Bucher Nurse Practitioner Consultancy 
  • The ISLAND clinic 

Victoria

  • Austin Cognitive Dementia and Memory Service (CDAMS), Heidelberg Repatriation Hospital
  • Barwon Health Cognitive Dementia and Memory Service (CDAMS), McKellar Centre
  • Bass Coast Health Geriatric Medicine Clinic
  • Caulfield Cognitive Decline and Memory Service (CDAMS), Caulfield Hospital 
  • Central Geriatrician Associates
  • Dr Jagadeesh Herur, Glencairn Private Consulting Suites
  • Dr Jagadeesh Herur, Harvester Private Consulting Suites
  • Dr Rebecca Iseli, Geriatrician, practising at North Melbourne Ear, Nose & Throat 
  • Eastern Cognitive Disorders Clinic
  • Eastern Health Cognitive Dementia and Memory Service (CDAMS), Wantirna Health
  • Echuca Regional Health Cognitive, Dementia and Memory Service (CDAMS)
  • Goulburn Valley Health Cognitive Dementia and Memory Service (CDAMS)
  • Grampians Cognitive Dementia & Service Clinic (CDAMS), Ballarat Health Service 
  • Irene Wagner’s Clinic 
  • Kingston Cognitive Dementia and Memory Service (CDAMS), Monash Health
  • Prof Dennis Velakoulis, Church Street Consulting Suites, The Melbourne Clinic
  • Royal Melbourne Hospital Cognitive Dementia and Memory Service (CDAMS), Royal Park
  • Royal Melbourne Hospital Neuropsychiatry Clinic, Royal Melbourne Hospital 
  • Western Health Cognitive Dementia and Memory Service (CDAMS), Footscray Hospital

Western Australia

  • Dr Roger Clarnette, Geriatrician practising at Hollywood Specialist Centre
  • Fremantle Hospital Comprehensive Care Centre
Condition
Dementia, Mild Cognitive Impairment
Name
Australian Dementia Network Registry
Lead organisation
Monash University
Ethics approval reference
Alfred Hospital HREC - Project 44037 (Local reference: 424/18)
Preferred published date
Immediately
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