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NIA and Alzheimer's Association Join
Forces
Promoting Major AD Genetics Initiative
Searching for 1,000 Families with
Multiple Members with AD
Alzheimer's Disease Education
& Referral Center , July 22, 2003
The National Institute on Aging
(NIA) is greatly advancing the search for genes involved in Alzheimer's
disease (AD) with acceleration of the AD Genetics Initiative. Joined by
the Alzheimer's Association, the NIA is stepping up the Initiative to
create a large bank of genetic material, cell lines, and data from
families with multiple members with late-onset AD. Scientists will use the
data bank in their quest to discover the risk factor genes that contribute
to late-onset AD, the most common form of the disease. Discovery of risk
factor genes will help illuminate the underlying disease processes of AD,
open up novel areas of research, and identify new targets for drug
therapy.
NIA-supported researchers across the U.S. and the Association's network of
local chapters will work with families having multiple members diagnosed
with late-onset AD in an effort to enlist 1,000 of those families over 3
years. The NIA, in consultation with the Association, is currently
developing information materials to aid local Association chapters and
NIA-supported Alzheimer's Disease Centers in recruitment and to provide
detailed information on the project. These materials will be distributed
to chapters and centers in the fall.
"We are so pleased to be working hand-in-hand with the Association
and its chapter network across the country on such an important
effort," says Marcelle Morrison-Bogorad, Ph.D., Associate Director,
Neuroscience and Neuropsychology of Aging Program at the NIA. "The
Association's commitment to research, coupled with the depth of its
efforts in the community, makes this a crucial alliance for moving this
research forward."
William Thies, Ph.D., Alzheimer's Association Vice-President for Medical
and Scientific Affairs, notes that the study is one way that families with
AD can make a major difference in the pace of research. "Discovery of
risk factor genes is essential for understanding the causes of late-onset
AD and for developing effective treatments and prevention strategies. We
welcome the opportunity to mobilize the Alzheimer's community toward this
end," he says.
Who Can Participate?
For a family to participate, there must be at least one affected pair of
siblings and at least one other affected relative or unaffected relative
for whom biological samples from blood or tissue are available. A
participating family could include, at a minimum, a pair of siblings
diagnosed with AD at age 60 or older and a third relative age 50 or older
at onset of AD or age 60 or greater if unaffected. Participation involves
a neurological examination or collection of medical records and the
donation of a blood sample, which will be made into a cell line (a family
of cells grown in the laboratory) that will enable the participant's DNA
to be available to qualified scientists over many years. Samples gathered
at autopsy from deceased family members may also be used to provide DNA.
Medical, demographic, and family history information also will be
collected. Unaffected family members also may be asked to participate. The
cell lines and DNA will be stored at a centralized repository at Indiana
University - the National Cell Repository for AD (NCRAD) - which is to
serve as the first point of contact for people interested in participating
in the Initiative.
There is no cost for those who join the study. To ensure broad
participation, study coordinators will make alternative arrangements for
participation if people eligible to take part are not located near a
designated study site.
Protections for Participants
An important part of the study is the confidential treatment of the
genetic information collected from participants. Researchers will not be
able to identify samples on an individual level. While clinical,
demographic and family history information about the participants will be
available to researchers, this information will also be free of unique
identifiers. Coded data on the blood sample will be stored in a secure
computer at the NCRAD. Detailed discussion of informed consent documents
will outline for participants how the study will be conducted and how data
will be protected at each site and at the cell repository.
Purpose of the Study
About 90 percent of people with AD have the late-onset variety, which
strikes people age 65 and older. There is no obvious inheritance pattern
with late-onset AD, but researchers have identified one "risk
factor" gene, the e4 variant of apolipoprotein E (apoE). This
discovery has opened up many important avenues to understanding the
biological and environmental interactions that may be important to the
development of late-onset AD. While scientists have drawn significantly
closer to identifying at least four regions of chromosomes where other
risk factor genes might be, a workshop convened by NIA in March 2002
strongly recommended that further collection and analysis of larger sample
sets are needed to root out these genes.
Study Sponsors
The Genetics Initiative Study Coordinator is Richard Mayeux, M.D.,
co-director of the Columbia University Alzheimer's Center in New York
City, a senior researcher who has investigated AD genetic risk in specific
populations in New York and the Caribbean. Twelve Alzheimer's Disease
Centers (ADCs) have been provided with supplemental funding from NIA to
recruit new individuals for genetics research and to deposit participants'
blood samples with NCRAD. NCRAD, under the direction of P. Michael
Conneally, Ph.D., was established in 1989 to store DNA and cells, collect
data on participants and their families, and distribute data and
biological materials free of charge to qualified investigators.
The NIA, part of the National Institutes of Health at the U.S. Department
of Health and Human Services, leads the Federal Government's effort to
support and conduct research on aging and age-related disorders and
diseases, including AD. In fiscal year 2003, the NIA will spend an
estimated $480.5 million on AD research, the largest single component of
its nearly $1 billion budget. The Alzheimer's Association is the largest
private supporter of research on AD. Through its national network of
advocates and chapters, the Association advances research, improves
services and care, creates awareness of AD and mobilizes support.
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© 2002 Global Action on Aging
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