Arizona Alzheimer’s Registry: Strategy and Outcomes

Abstract

Background: The Arizona Alzheimer’s Consortium (AAC) is a statewide Alzheimer’s disease (AD) research consortium. In 2006 the AAC created the Arizona Alzheimer’s Registry (Registry), a screening and referral process for people interested in participating in AD-related research. The Registry goals were to increase awareness of AD research and accelerate enrollment into AAC studies. Registrants were matched to AAC studies according to interest, location, and eligibility. Methods: Anyone age 18 and older was eligible. Registrants were recruited by community outreach, mass mailings, earned and paid media, and the Internet. Those interested received a welcome packet, consent, and questionnaire, which were reviewed by staff via telephone prior to brief cognitive screening. Evaluation of medical history, cognitive status, and interests resulted in a referral to existing AAC studies or being held for future referral. Results: 2263 people contacted the Registry. 1257 consented and 1182 underwent an initial cognitive screening. Earned media was the most effective recruitment strategy. Registrants had a mean age of 68.1 (SD 10.6), 97% were Caucasian, had 15.2 (SD 2.7) mean years of education, and 60% were female. 30% reported a family history of dementia, 20% reported a diagnosis of cognitive impairment or dementia, and 70% subjectively reported normal cognition. Initial telephone assessments revealed 681 with no impairment, 269 with possible cognitive impairment, and 234 with possible dementia. 301 were referred to AAC sites for potential enrollment into a study. Conclusion: The Registry created an infrastructure and process to screen and refer a high volume of eager Registrants. These methods were found to be effective at prescreening individuals for studies, which facilitated AAC research recruitment. The established infrastructure and experiences gained from the Registry have served as the prototype for the web-based Alzheimer’s Prevention Registry, a national registry focusing on AD prevention research.