School of Public Health and Preventive Medicine, Monash University, Level 3, 553 St Kilda Rd, Melbourne, Victoria, 3004, Australia.
Centre for Healthy Brain Ageing (CHeBA), School of Psychiatry, University of New South Wales, Sydney, New South Wales, Australia.
BMC Geriatr. 2020 Sep 7;20(1):330. doi: 10.1186/s12877-020-01741-2.
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.
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.
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.
2016 年，痴呆症被确定为澳大利亚制定临床质量登记册（CQR）的优先领域。澳大利亚痴呆症网络（ADNeT）登记册正在作为 ADNeT 计划的一部分建立，主要目的是收集数据，以监测和提高诊断为痴呆症或轻度认知障碍（MCI）的人的护理质量和患者结果。次要目标是促进痴呆症研究和试验的参与者招募。本文介绍了登记册的方案。
ADNeT 登记册是一种新诊断为痴呆症或 MCI 的患者的前瞻性 CQR。最初将从参与痴呆症诊断的记忆诊所和个别医疗专家（如老年病学家、精神病学家和神经科医生）中确定符合条件的患者。将使用退出或弃权同意的方式招募参与者，这基于三个关键决定因素（能力、责任人以及诊断的沟通）。数据将从四个来源收集：参与地点、登记册参与者、护理人员以及与行政数据集的链接。预计到 2023 年底，登记册将招募约 10000 名参与者。ADNeT 登记册将根据国家 CQR 操作原则进行开发和实施，并由 ADNeT 登记册指导委员会管理。
ADNeT 登记册将提供澳大利亚在诊断、治疗和护理痴呆症和 MCI 患者以及这些患者的长期结果方面的当前临床实践的重要数据。这些数据将有助于确定临床实践和患者结果的差异以及导致这些差异的原因，从而为改善痴呆症和 MCI 患者的护理和结果提供干预措施的开发。
