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Alzheimer's Clinical Studies: Clear Guidance On Recruiting Volunteers

ADRCs. Centers were queried about their recruitment strategies and outcomes. Transcripts were independently reviewed by investigators, and data were coded for analyses. Results: Surveyed ADRCs were funded between 4 to 28 years (M=12); Number of investigators at each center varied from 2 to 23 (M=11), and number of support staff ranged from 5 to 100 (M=19). Sixty percent of centers have staff dedicated to subject recruitment and retention. All ADRCs utilize community outreach and educational seminars to promote participation. Seventeen centers visit health-fairs and fifteen recruit from patient clinics. Fifty percent of centers reported the most successful recruitment strategy was recruitment from clinics. Other successful strategies include word of mouth (N=4), referrals from physicians (N=3), community outreach (N=2), and memory screenings (N=1). Recruitment hurdles reported included minority recruitment (40%) and inclusion/exclusion criteria (30%). Additional recruitment barriers were space, staffing level, lack of interest, and loss to follow-up. Half of ADRCs utilize a recruitment registry with participation ranging from 200 to 1500+. Interestingly, only six sites report the registry as a beneficial recruitment tool. Despite identified hurdles, 65% of ADRCs report meeting annual recruitment goals. There was no correlation between presence of recruitment staff and 1) preferred method of recruitment or 2) a center"s ability to meet recruitment goals. Furthermore, although all ADRCs have a website, few (35%) see it as an active tool for recruitment. Conclusions: These data suggest that successful recruitment is a result of a comprehensive recruitment plan. The successful ADRC 1) promotes study participation while conducting community educational events, and 2) partners with outside physicians. Those interviewed agreed that without the support of lay community and physicians, recruitment goals are not met. The successful ADRC has built their program using educational seminars, free screenings, and a willingness to serve to the community. Control #: 09-A-1958-ALZ P1 - Sunday Posters, Presentation #P1-195 Ascertaining Older African Americans for Genetic Studies in Alzheimer"s Disease Goldie S. Byrd1, Margaret Pericak-Vance2, Christopher L. Edwards3, Ashleigh Taylor1, Vinaya Kelkar1, Jennifer R. Byrd1, Takiyah D. Starks1, Dora Som Pimpong1, Yi-Ju Li3 1North Carolina A&T State University, Greensboro, NC, USA; 2University of Miami, Miami, FL, USA; 3Duke University, Durham, NC, USA. Disclosure Block: G.S. Byrd, None; M. Pericak-Vance, None; C.L. Edwards, None; A. Taylor, None; V. Kelkar, None; J.R. Byrd, None; T.D. Starks, None; D. Som Pimpong, None; Y. Li, None. Background: According to the Alzheimer"s Association, Alzheimer"s Disease (AD) occurs much more frequently in African Americans than Caucasians. In spite of governmental regulations on inclusion, such as the 1993 Revitalization Act, African Americans remain underrepresented at all levels of the clinical trials and biomedical research process for AD. Genetic studies of AD that require blood samples and target minority populations remain a challenge to design and execute based on significant reported difficulties in recruiting willing elderly minorities. Methods: The recruitment goal of a larger AD study was to ascertain 2000 African Americans to participate in genetic studies of AD. We devised a recruitment model that included: 1. Hiring African Americans study personnel, 2. Developing culturally sensitive educational materials and advertisements, and 3. Partnering with African American community stakeholders. In addition, we developed a 50 question survey to investigate perceptions and to inform our recruitment efforts for AD research participation among African Americans. Results: From 500 survey respondents, our data show that general open enrollment for genetic studies is insufficient for ascertaining large numbers of African Americans; however, strategic partnerships with churches and influential community leaders yield significantly greater interest and participation. Among persons who had never participated in a study, 60% of those in the 60-69 age range with a family history of AD, were very willing to participate, independent of their knowledge of historical research atrocities such as the Tuskegee Syphilis Study. African Americans were also willing to participate in several types of research studies including: surveys, focus groups, clinical trials and genetic studies. Though 72% of respondents indicated a willingness to participate if blood samples were needed, enthusiasm for such studies diminished as age increased. As expected, surveys were the most preferred form of participation in all age groups. Having a relative with the disease, use of minority study personnel, and monetary compensation were the most powerful incentives for participation in genetic research. Conclusions: We conclude that large percentages of African Americans are willing participants for genetic studies. However, they require culturally sensitive methodologies that include reciprocity. These data are powerful in advancing recruitment of African Americans in genetic studies of AD. Control #: 09-A-2079-ALZ F2-01 - Social-Behavioral Interventions: Methods and Outcomes - Presentation #F2-01-01 Why AD patients and caregivers participate in randomized clinical trials Ulrika Akenine1, Niels Andreasen1, Yvonne Freund-Levi2, Bengt Winblad2, Miia Kivipelto2 1Karolinska University Hospital, Huddinge, Sweden; 2Karolinska Institute, Stockholm, Sweden. Disclosure Block: U. Akenine, None; N. Andreasen, None; Y. Freund-Levi, None; B. Winblad, None; M. Kivipelto, None. Background: With growing intensity of research related to Alzheimer"s disease (AD) and large number of patients participating in clinical trials, there is increasing interest and need to clarify patients" situation in the studies. The aim of our study was to investigate the motives and expectations of patients and their relatives for participating in the Randomized Controlled Trials (RCT). Methods: Altogether 19 (out of 20) AD patients and their relatives participating in five different vaccination studies at the Memory Clinic, Karolinska University Hospital, Huddinge, Sweden, answered a questionnaire with open and structured questions. The patients had mild-to-moderate AD mean MMSE 23 and age range was 66 years. Results: The result showed that the motives to participate for both patients and their relatives were to help science/contribute to research, hope for easing of symptoms or cure, have access to information, and possibility to have their questions answered. Patients and relatives reported that access to medical expertise and regular health checkups were advantages of study participation. Among the disadvantages were the risk of receiving placebo, discomfort/pain during sample-taking and exams, and the risks of side effects and harm. Patients reported to a greater extent that they did not see any disadvantages in participating in a RCT, while their relatives expressed greater concern regarding the risk of receiving placebo, the risk for side effects and pain or discomfort for the participator. Both patients and relatives reported that they had received sufficient information about study participation before the study started, but as the desire for information was a common motive for study participation, the wish for more information remains through the study. Conclusions: This study shows the motives of both patients and their relatives. A large numbers of patients and their caregiver will face the question whether to participate in RCTs, and health care providers, patient organizations, and pharmaceutical companies have increasing need to address these questions. To increase quality and compliance as well as to ensure that the ethical aspects of patient satisfaction are fulfilled in the RCT, more knowledge about patients" and their caregivers" motives and expectations of study participation is needed. Niles Frantz Alzheimer"s Association

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