Table 2.

Proposed data sources, data content and data collection time points for ADNeT Registry

Data sources	Data content	Data collection time points
		At recruitment	Clinical follow-up appointments	Anticipated annual patient and carer follow-ups
Participating sites	Patient identifiers (e.g., first name, last name, and date of birth)	x
	Patient demographic information (e.g., country of birth, and highest attained level of education)	x
	Information relevant to recruitment methods (e.g., capacity to opt out, communication of diagnosis)	x	x
	Baseline clinical data (e.g., date of diagnosis, type of dementia)	x
	Follow-up clinical data		x
Registry participants (except those recruited under waiver of consent)	Patient survey	x		x
Carers (except patients recruited under waiver of consent)	Carer survey	x		x
Administrative datasets (via data linkage)	Anticipated to include data routinely collected by various government bodies, such mortality, hospitalisation, prescribed medication, and aged care service utilisation			Periodically as appropriate