Optimising participation of persons with cognitive impairment in a national dementia registry: challenges and solutions

Xiaoping Lin, Kasey Wallis, Susannah Ahern, Henry Brodaty, Christopher Rowe, Barbara Kain, Sally Lambourne, John McNeil, Stephanie A. Ward

Research output: Contribution to journalArticleResearchpeer-review

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.

Original languageEnglish
Pages (from-to)988-992
Number of pages5
JournalInternal Medicine Journal
Volume51
Issue number6
DOIs
Publication statusPublished - Jun 2021

Keywords

  • dementia
  • informed consent
  • neurodegenerative disorders
  • quality of health care
  • registries
  • research ethics

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