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

• Published in: BMC geriatrics 2020-09, Vol.20 (1), p.330-10, Article 330
• Main Authors: Lin, Xiaoping, Wallis, Kasey, Ward, Stephanie A, Brodaty, Henry, Sachdev, Perminder S, Naismith, Sharon L, Krysinska, Karolina, McNeil, John, Rowe, Christopher C, Ahern, Susannah
• Format: Article
• Language: English
• Subjects: Australia - epidemiology; Caregivers; Clinical outcomes; Clinical quality registries; Clinical trials; Cognitive ability; Cognitive Dysfunction - diagnosis; Cognitive Dysfunction - epidemiology; Cognitive Dysfunction - therapy; Consent; Data dictionaries; Dementia; Dementia - diagnosis; Dementia - epidemiology; Dementia - therapy; Dementia disorders; Diagnosis; Disease; Geriatrics; Health care quality; Health services; Hospitals; Humans; Memory; Mild cognitive impairment; Neurocognitive disorders; Older people; Pathology; Patients; Prospective Studies; Registries; Study Protocol
• ISSN: 1471-2318; 1471-2318
• 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.