Arizona Alzheimer's Registry: Strategy and Outcomes of a Statewide Research Recruitment Registry.
BACKGROUND
The Arizona Alzheimer's Consortium (AAC) created the Arizona Alzheimer's Registry, a screening and referral process for people interested in participating in Alzheimer's disease related research. The goals of the Registry were to increase awareness of Alzheimer's disease research and accelerate enrollment into AAC research studies.


METHODS
Participation was by open invitation to adults 18 and older. Those interested provided consent and completed a written questionnaire. A subset of Registrants underwent an initial telephone cognitive assessment. Referral to AAC sites was based on medical history, telephone cognitive assessment, and research interests.


RESULTS
A total of 1257 people consented and 1182 underwent an initial cognitive screening. Earned media (38.7%) was the most effective recruitment strategy. Participants 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 and 70% normal cognition. Inter-rater agreement between self-reported memory status and the initial telephone cognitive assessment had a kappa of 0.31-0.43. 301 were referred to AAC sites.


CONCLUSIONS
IThe 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 Alzheimer's disease prevention research.
University of Arizona College of Medicine Phoenix, AZ, USA.
K T
KT
Saunders
Banner Alzheimer's Institute Phoenix, AZ, USA ; Arizona Alzheimer's Consortium Phoenix, AZ, USA.
J B
JB
Langbaum
Saint Joseph's Hospital and Medical Center, Phoenix, AZ, USA.
C J
CJ
Holt
University of Arizona College of Medicine Phoenix, AZ, USA.
W
W
Chen
Banner Alzheimer's Institute Phoenix, AZ, USA ; Arizona Alzheimer's Consortium Phoenix, AZ, USA.
N
N
High
Banner Alzheimer's Institute Phoenix, AZ, USA ; Arizona Alzheimer's Consortium Phoenix, AZ, USA.
C
C
Langlois
Arizona Alzheimer's Consortium Phoenix, AZ, USA ; Banner Sun Health Research Institute, Sun City, AZ, USA.
M
M
Sabbagh
Banner Alzheimer's Institute Phoenix, AZ, USA ; Arizona Alzheimer's Consortium Phoenix, AZ, USA.
P N
PN
Tariot
Alzheimer's disease; prevention; recruitment; registry