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

2021-06

Lin, Xiaoping

Wallis, Kasey

Ahern, Susannah

Brodaty, Henry

Rowe, Christopher C

Kain, Barbara

Lambourne, Sally

McNeil, John

Ward, Stephanie A

dementia

informed consent

neurodegenerative disorders

quality of health care

registries

research ethics

Journal Article

0000-0002-8785-0694

10.1111/imj.15357

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.

link

Internal Medicine Journal 2021; 51(6): 988-992

Internal Medicine Journal