Table 2.

Data elements included in the review

Category	Data elements
Type of registry	dementia research registry (including a preclinical dementia research registry), epidemiological dementia registry, quality of dementia care registry, dementia research volunteer registry
Registry coverage	international, national, local/state-wide
Language of collected data	Language of collected data
Year registry was established (or where applicable, period covered by data collection)	year, time period
Number (N) of registered participants	N (most recent)
Dementia type	dementia, AD (if other, specify)
Diagnostic system	ICD, DSM, NINCDS-ADRDA, not applicable
Recruitment setting	health care services, awareness campaign/general population, data linkage, other
Consent	opt-in, opt-out, other, info not available (if other, specify)
Registry population	patients with a diagnosis of AD/dementia, carers, family members of people with AD/dementia, individuals at risk of developing dementia/AD, normal (i.e., no diagnosis of dementia/AD) control subjects
Type of collected data	cognition, demographics, function, imaging and other biomarker measures, other (e.g., caregiver burden, BPSD symptoms)

DSM - Diagnostic and Statistical Manual of Mental Disorders; ICD - International Classification of Diseases; NINCDS-ADRDA – the National Institute of Neurological and Communicative Disorders and Stroke and the Alzheimer’s Disease and Related Disorders Association criteria