Table 1 Sources for the self-referred and actively recruited cohorts

Brochure or advertisement

Participants saw recruitment brochures that study staff left in neurology clinic waiting rooms and related locations or responded to newspaper advertisements or flyers about the study

233

Media*

Participants read about the study in a newsletter, newspaper article or book

91

Web site*

Participants (a) found a website created at one of the participating study sites; (b) visited a news or entertainment website that was discussing the REVEAL study; (c) found study details on a website that helped studies enrol participants (for example, ClinicalTrials.gov); or (d) said they had learned about the study ‘online,’ ‘on the internet,’ or through a ‘Google search’ without being more specific

64

Study presentation

Participants attended a community event to raise awareness about AD where study personnel presented

49

Friend

Participants learned about the study from acquaintances who were already participating or heard about the study in the media

49

Acquaintance*

Participants mentioned a specific individual who told them about the REVEAL study

37

Health fair*

Participants approached a booth at a local health fair set up by Howard University

10

Wait list*

Boston University waitlisted individuals who had wanted to participate in the first REVEAL study trial

10

Self-referred*

Study personnel labeled participants as ‘self-referred’ without elaboration

3

Another research study

Researchers specializing in neurology and AD discussed the REVEAL study with patients enrolled in a separate study

149

Called at home or work

Study personnel called individuals who provided contact information for research purposes, usually through membership in a research registry

35

Provider referral*

A nurse, physician, or genetic counselor referred the participant to the study

25

Mailing*

Participants received mailings because they (a) had relatives who participated in the AD Anti-Inflammatory Prevention Trial (ADAPT), (b) were members of the Michigan AD Research Center registry, or (c) were members of the Michigan Dementia Coalition

15

Clinic intake*

Howard University personnel classified individuals they had approached at neurology clinics this way

12

Alzheimer’s Disease Center (ADC) referral*

The Boston University ADC referred individuals to the REVEAL study who (a) wanted to participate in another study that was already closed or for which they did not qualify, or (b) accompanied AD-affected relatives to ADC appointments for another study

7

Approached in the waiting room

REVEAL study personnel approached families in waiting areas of neurology and geriatrics clinics

6