Table 2 Proposed data sources, data content and data collection time points for ADNeT Registry

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