Persistent Link:
http://hdl.handle.net/10150/315927
Title:
Arizona Alzheimer’s Registry: Strategy and Outcomes
Author:
Saunders, Kelley
Affiliation:
The University of Arizona College of Medicine - Phoenix
Issue Date:
Apr-2014
Rights:
Copyright © is held by the author. Digital access to this material is made possible by the College of Medicine - Phoenix, University of Arizona. Further transmission, reproduction or presentation (such as public display or performance) of protected items is prohibited except with permission of the author.
Collection Information:
This item is part of the College of Medicine - Phoenix Scholarly Projects 2014 collection. For more information, contact the Phoenix Biomedical Campus Library at pbc-library@email.arizona.edu.
Publisher:
The University of Arizona.
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.
MeSH Subjects:
Alzheimer Disease; Arizona; Registries
Description:
A Thesis submitted to The University of Arizona College of Medicine - Phoenix in partial fulfillment of the requirements for the Degree of Doctor of Medicine.
Mentor:
Tariot, Pierre MD

Full metadata record

DC FieldValue Language
dc.language.isoen_USen
dc.titleArizona Alzheimer’s Registry: Strategy and Outcomesen_US
dc.contributor.authorSaunders, Kelleyen_US
dc.contributor.departmentThe University of Arizona College of Medicine - Phoenixen_US
dc.date.issued2014-04-
dc.rightsCopyright © is held by the author. Digital access to this material is made possible by the College of Medicine - Phoenix, University of Arizona. Further transmission, reproduction or presentation (such as public display or performance) of protected items is prohibited except with permission of the author.en_US
dc.description.collectioninformationThis item is part of the College of Medicine - Phoenix Scholarly Projects 2014 collection. For more information, contact the Phoenix Biomedical Campus Library at pbc-library@email.arizona.edu.en_US
dc.publisherThe University of Arizona.en_US
dc.description.abstractBackground: 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.-
dc.typeThesisen
dc.subject.meshAlzheimer Diseaseen_US
dc.subject.meshArizonaen_US
dc.subject.meshRegistriesen_US
dc.descriptionA Thesis submitted to The University of Arizona College of Medicine - Phoenix in partial fulfillment of the requirements for the Degree of Doctor of Medicine.en_US
dc.contributor.mentorTariot, Pierre MD-
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