|
 The
National Institutes of Aging (NIA) a division of the National Institutes
of Health (NIH), has launched a national initiative to identify
subjects for studies to identify the genes increasing the risk for
late onset Alzheimer’s disease (AD). This initiative is coordinated
through the efforts of investigators
at Columbia University, under the direction of Dr. Richard Mayeux.
The samples and clinical data are stored at the National Cell Repository
for Alzheimer’s Disease (NCRAD) physically located at Indiana
University. Currently, families with multiple members with late
onset Alzheimer Disease are being recruited. At this time, medical
professionals and researchers who know of a family or families that
may qualify for participation in the National Cell Repository for
Alzheimer’s Disease are encouraged to discuss this project
with those families.
The new NIA initiative has been termed ‘The Alzheimer’s
Disease Genetics Study’. The initiative seeks to identify
multiplex, late onset Alzheimer’s disease families particularly
informative for genetic studies. Families must meet the following
criteria:
- Two living siblings (brothers or sisters) with onset of AD
at age 60 or older (or available tissue from a deceased individual).
- Another family member who can participate and either:
- has no symptoms of memory loss or dementia and is 60 years
of age or older.
OR
- has symptoms of memory loss or dementia and is 50 years of
age or older.
Details of the study protocol are available in the Study
Procedures Manual. A brief review of the study elements are
described below or at the AD
clinical trial database. All questions regarding study protocol
should be directed to Susan
LaRusse, M.S. of Columbia University's Taub Institute at 212-305-0288.
- Obtain family history information to ensure study eligibility.
- Obtain current medical records (particularly from affected
individuals).
- Complete a clinical evaluation and computerize elements from
the minimal dataset.
- Obtain a blood specimen to isolate DNA and to establish an
immortalized cell line.
- Offer and plan an autopsy.
- Maintain annual family contact.
Some families that could be very important for other research studies
may not meet the criteria outlined above for the ‘NIA Alzheimer’s
Disease Genetics Study’. NIA and the NCRAD are eager to enroll
families meeting other important research criteria. These criteria
are outlined below, and should be considered for families not meeting
criteria for the ‘NIA Alzheimer’s Disease Genetics Study
’. For additional information, please contact the NCRAD staff:
alzstudy@iupui.edu or 1-800-526-2839.
1. Late Onset families without 2 living siblings with AD.
The NCRAD continues to recruit families having 2 living individuals
affected with AD. Those families with 2 living siblings (brothers
or sisters) with AD will be referred to the ‘NIA Alzheimer’s
Disease Family Genetics Family Study’. Other families with
at least 2 living relatives with AD can still participate in research
by contacting the NCRAD. For more details, contact the NCRAD staff
at alzstudy@iupui.edu or
1-800-526-2839.
2. Families with early onset Alzheimer disease
The NCRAD is actively recruiting families with 2 or more living
members with early onset AD. Individuals who have onset of AD prior
to the age of 60 years of age are considered to have early onset
AD. Over the past 12 years, the NCRAD has worked with many families
meeting these criteria and are eager to identify more families meeting
this earlier onset criteria. For more details, contact the NCRAD
staff at alzstudy@iupui.edu
or 1-800-526-2839.
3. Families with non-AD dementia
The NCRAD will also enroll families with 2 or more members with
a hereditary dementia that is not Alzheimer’s disease. In
the past, families with frontotemporal dementia, Pick’s disease,
Lewy body dementia have participated in the study. For more information,
contact the NCRAD staff at alzstudy@iupui.edu
or 1-800-526-2839.
|
