P4-371: Arizona Alzheimer's research registry part two progress and findings from year one

The Alzheimer's Research Registry was developed by the Arizona Alzheimer's Consortium (AAC) to expedite recruitment in current and future clinical trials. The Registry launched in 3/07; the goal was 20 enrollments by 7/1/07. Participants age> 49 with or without memory problems completed consent, medical history, and research interest questionnaire and underwent a telephone based cognitive assessment. Registrants were then triaged to appropriate studies at AAC sites or held for future referral. The Registry recorded over 1100 intake calls and enrolled over 700 participants from the community as of 1/08. We made >5000 calls; rapid follow-up has resulted in a 62% enrollment rate. Mean age was 69.4 (9.2); 97% were Caucasian. 558 participants have completed cognitive assessment. Participants self-reported cognitive status prior to telephone cognitive assessment and were then tested with up to 3 instruments; a functional tool modified for the Registry, Telephone Interview Cognitive Screen (TICSm), and Rey AVLT total score. 79/197 participants with objective evidence of memory impairment had a diagnosed cognitive disorder and were immediately referred to AAC sites; the remainder received clinical referrals. Those without cognitive impairment are being retained for future research referral. Media coverage was the most effective recruitment strategy (65% of all participants). Paid advertising including newspaper advertisements and direct mail yielded 1.5 participants/ $1000 spent or 1000 pieces. The Registry represents a novel clinical recruitment strategy for AD that was well received by the community. For many participants the Registry represented a first step for investigating their own cognitive status. The screening tools have proved to be effective for prescreening for studies and have facilitated enrollment in AAC clinical research. All project tools have been standardized and validated and this model can be replicated at other clinical research sites.