Journal article
Optimising participation of persons with cognitive impairment in a national dementia registry: challenges and solutions
X Lin, K Wallis, S Ahern, H Brodaty, C Rowe, B Kain, S Lambourne, J McNeil, SA Ward
Internal Medicine Journal | WILEY | Published : 2021
DOI: 10.1111/imj.15357
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.
Grants
Awarded by National Health and Medical Research Council
Funding Acknowledgements
Funding for the ADNeT registry is from two projects: (i) The Australian Dementia Network (ADNeT): Bringing together Australia's dementia stakeholders, which is funded by the National Health and Medical Research Council (NHMRC)'s National Institute for Dementia Research (NNIDR) (Principal investigator: C. Rowe, NHMRC APP: 1152623); and (ii) A pilot dementia clinical Quality registry to improve dementia clinical care, which is funded by NNDIR (Principal investigator: J. McNeil, NHMRC APP 1140485). The funding body has no role in the design of the study, collection, analysis, and interpretation of the data, and in writing the manuscript.