Three New Studies Give Clear Guidance on How to Better Recruit Volunteers for Alzheimer's...

Three New Studies Give Clear Guidance on How to Better Recruit Volunteers for
Alzheimer's Clinical Studies

- Overcoming the Biggest Obstacle to Improving Alzheimer's Treatments -

VIENNA, Austria, July 12 /PRNewswire/ -- Partnering with local physicians,
working with local clinics, and conducting educational seminars and health
fairs were found to be the most effective tools in recruiting people for
Alzheimer's clinical studies, according to new research reported today at the
Alzheimer's Association 2009 International Conference on Alzheimer's Disease
(ICAD 2009) in Vienna.

(Logo: http://www.newscom.com/cgi-bin/prnh/20090529/ICADLOGO )

Surprisingly, patient registries and Internet recruiting were found to be much
less successful recruitment strategies, according to staff at the U.S.
Alzheimer's Disease Centers (ADCs). The National Institute on Aging (NIA)
funds 30 ADCs at major medical institutions across the nation.
(http://www.nia.nih.gov/Alzheimers/)

"Second only to inadequate funding, recruiting participants for clinical
studies is the single greatest barrier to developing better treatments for
Alzheimer's disease," according to William Thies, PhD, Chief Medical &
Scientific Officer at the Alzheimer's Association. "These studies give us
clear information - from people who are conducting large scale clinical trials
now - on how we may recruit participants better and faster in the future."

In another study looking specifically at recruiting African Americans for
Alzheimer's genetics studies, researchers in North Carolina and Florida found
that having a relative with the disease, use of minority study personnel, and
monetary compensation were the most powerful incentives for participation in
research.

Successful Recruitment Strategies from the U.S. Alzheimer's Disease Centers
Tamara Markgraf, MBA, Research Program Manager at the Wisconsin Alzheimer's
DiseaseResearchCenter in Madison and colleagues interviewed 22 administrators
and outreach staff from 20 ADCs about their recruitment strategies and
outcomes.

They found that all ADCs utilize community outreach and educational seminars
to promote clinical study participation. 17 centers visit health-fairs; 15
recruit from patient clinics. 10 centers reported that the most successful
recruitment strategy was recruitment from clinics. Other successful strategies
included word of mouth (4) and referrals from physicians (3).
All the ADCs reported partnering with outside organizations such as the
Alzheimer's Association. Several have linked with churches, church groups, or
church leaders in efforts to boost recruitment, in particular minority
recruitment. Many tried sending out postcards to high density postal codes,
and other mass mailings. Advertising was not an option for most of those who
reported, due to budget constraints.

Recruitment hurdles reported included minority recruitment (8) and
inclusion/exclusion criteria (6). Half of ADCs utilize a recruitment registry
with databases ranging from 200 to more than 1,500. Interestingly, only six of
20 sites reported their registry as a "beneficial" recruitment tool. In
addition, although all ADCs have a website, few (7) see it as a beneficial,
active tool for clinical study recruitment. In fact, the Internet was found to
be the least successful reported strategy. Despite identified hurdles, 13 of
the ADCs report meeting annual recruitment goals.

"Our data suggest that successful recruitment is a result of a comprehensive
recruitment plan," Markgraf said. "The successful ADCs promote study
participation while conducting community educational events, and they actively
partner with outside physicians. The professionals we interviewed told us that
they best way to meet recruitment goals is to get the support of the local
community and physicians."

Encouraging African American Participation in Alzheimer's Genetics Studies
Despite government regulations on inclusion of women and minorities in
clinical research, such as the 1993 Revitalization Act, ethnic minorities
continue to be underrepresented in biomedical research studies and clinical
trials, including Alzheimer's studies. As part of an effort to recruit African
Americans for an Alzheimer's disease genetics study, Goldie S. Byrd, PhD,
Nathan F. Simms Endowed Professor in the Department of Biology at North
CarolinaA&TStateUniversity, and colleagues surveyed 500 African American
adults to investigate perceptions and inform recruitment efforts for
Alzheimer's research participation.

They found that having a relative with the disease, use of minority study
personnel, and monetary compensation were the most powerful incentives for
participation of African Americans in Alzheimer's genetic research. In
addition, partnerships with churches and influential community leaders were
found to yield significantly greater interest and participation.

"Among survey respondents who had never participated in a research study, 60
percent of those in the 60 to 69 age range with a family history of
Alzheimer's were very willing to participate, independent of their knowledge
of historical research atrocities such as the Tuskegee Syphilis Study," Byrd
said.

The researchers found that African Americans were willing to participate in
several types of research studies, including surveys, focus groups, clinical
trials, and genetic studies - surveys were the most preferred form of
participation in all age groups. Though 72% of respondents indicated a
willingness to participate if blood samples were needed, enthusiasm for such
studies diminished as age increased.

"Large percentages of African Americans are willing participants for
Alzheimer's genetic studies, if culturally sensitive techniques are used to
recruit them," Byrd said.

Why People with Alzheimer's and Their Relatives Participate in Clinical
Studies
In order to further inform the clinical study recruitment process, Ulrika
Akenine, MS, a registered nurse at the Memory Clinic, Geriatrics Department,
KarolinskaUniversityHospital, Stockholm, and colleagues investigated the
motives and expectations of people with dementia and their relatives for
participating in Alzheimer's research trials.

For the study, 19 people with mild to moderate Alzheimer's, average age 66
years, and their relatives (20 caregivers) participating in five different
vaccination studies at the clinic answered a questionnaire during October and
November 2008. Primary motives to participate for both patients and their
relatives were helping science and contributing to research, hope for easing
of symptoms or cure, and getting access to more information about the disease.
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 risk of side effects. People with
Alzheimer's reported to a greater extent than caregivers that they did not see
any disadvantages to participating in a research study.

"Research on Alzheimer's is intense, and there is great hope for new drugs
that will ease the impact of the disease," Akenine said. "Many people with
dementia and caregivers will face the question of whether to participate in
clinical trials. We hope our research helps inform healthcare providers,
advocacy organizations, and pharmaceutical companies who have increasing need
to address these questions."

About ICAD 2009
The 2009 Alzheimer's Association International Conference on Alzheimer's
Disease (ICAD 2009) brings together more than 5,000 researchers from 60
countries to share groundbreaking research and information on the cause,
diagnosis, treatment and prevention of Alzheimer's disease and related
disorders. As a part of the Association's research program, ICAD 2009 serves
as a catalyst for generating new knowledge about dementia and fostering a
vital, collegial research community. ICAD 2009 will be held in Vienna, Austria
at Messe Wien Exhibition and CongressCenter from July 11-16.

About the Alzheimer's Association
The Alzheimer's Association is the leading voluntary health organization in
Alzheimer care, support and research. Our mission is to eliminate Alzheimer's
disease through the advancement of research, to provide and enhance care and
support for all affected, and to reduce the risk of dementia through the
promotion of brain health. Our vision is a world without Alzheimer's. For more
information, visit www.alz.org.

-- Tamara S. Markgraf - Recruiting for Alzheimer's disease Research: A
systematic review of recruitment techniques and challenges among NIH
funded ADRCs (Funders: National Institute on Aging, John A Hartford
Foundation, Hartford Center of Excellence in Geriatrics Medicine and
Training)

-- Goldie S. Byrd - Ascertaining Older African Americans for Genetic
Studies in Alzheimer's Disease

(Funders: NationalCenter on Minority Health and Health Disparities; National
Institute on Aging)
-- Ulrika Akenine - Why AD patients and caregivers participate in
randomized clinical trials (Self funded)

SOURCE Alzheimer's Association

Alzheimer's Association media line, +1-312-335-4078, media@alz.org; or ICAD
2009 press room, July 11-16: +43 (0)1 931020 7501