Please use this identifier to cite or link to this item: https://ahro.austin.org.au/austinjspui/handle/1/26812
Title: Optimising participation of persons with cognitive impairment in a national dementia registry: challenges and solutions.
Austin Authors: Lin, Xiaoping;Wallis, Kasey;Ahern, Susannah;Brodaty, Henry;Rowe, Christopher C ;Kain, Barbara;Lambourne, Sally;McNeil, John;Ward, Stephanie A
Affiliation: Consumer Engagement, Dementia Australia, Sydney, New South Wales, Australia
Dementia Centre for Research Collaboration, School of Psychiatry, University of New South Wales, Sydney, New South Wales, Australia
Molecular Imaging and Therapy
Florey Department of Neuroscience and Mental Health, The University of Melbourne, Melbourne, Victoria, Australia
Carer representative, Melbourne, Victoria, Australia
School of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia
Centre for Healthy Brain Ageing, School of Psychiatry, University of New South Wales, Sydney, New South Wales, Australia
Department of Geriatric Medicine, The Prince of Wales Hospital, Sydney, New South Wales, Australia
Issue Date: Jun-2021
Publication information: Internal Medicine Journal 2021; 51(6): 988-992
Abstract: Clinical quality registries are increasingly utilised to monitor and improve healthcare quality. Opt-out consent is recommended to maximise participation and ensure validity of data, however, presents specific considerations when including persons with impaired decision-making abilities. This paper describes the innovative Australian Dementia Network Registry recruitment framework designed to optimise inclusion of people with dementia and mild cognitive impairment.
URI: https://ahro.austin.org.au/austinjspui/handle/1/26812
DOI: 10.1111/imj.15357
ORCID: 0000-0002-8785-0694
Journal: Internal Medicine Journal
PubMed URL: 34155757
Type: Journal Article
Subjects: dementia
informed consent
neurodegenerative disorders
quality of health care
registries
research ethics
Appears in Collections:Journal articles

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