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DNA donation for research
You are invited to participate in research on the genetic
factors involved in causing or contributing to the development
of conditions affecting the ageing brain, including Alzheimer’s
disease, frontotemporal dementia, dementia with Lewy bodies,
Parkinson’s disease and other similar conditions. For
these studies to be relevant, we need to assess families without
these conditions, as well as families with them. The purpose
of this research is to discover how genes interact with other
factors (individual or environmental) to influence degenerative
disease processes. If you agree, you will be asked to provide
a blood sample of approximately 60 ml (or other tissue sample).
The discomforts are those of a routine blood test: there may
be mild discomfort when the blood is collected, and some bruising
may be present for a few days. We will ask for some limited
information about a number of family members, and request
your participation in annual questionnaires concerning your
basic health. Any information that is obtained in connection
with this study will remain confidential. You may withdraw
your consent at any time.
What happens to the blood or
tissue sample?
The DNA is extracted and a number of samples prepared. Some
of the DNA is stored for future testing, and may sometimes
be sent to collaborating scientists either in Australia or
overseas so as to improve the chances of finding the genes
involved, or studying their function. Several genes associated
with neurodegeneration in the population are identified and
their normal variation assessed. In order to ensure an ongoing
source of DNA, or to use living cells to study the genetic
features or their effects in terms of protein changes, white
blood cells from certain individuals are kept growing in the
laboratory. This is called a cell line.
For participants with a strong family history of disease,
genes in which rare mutations have already been associated
with neurodegeneration are screened. If no mutation is found,
the DNA is compared with that from other members of the family
to see whether a characteristic pattern occurs in people who
have the disease. This is called a linkage analysis, but is
only possible in families where DNA is available from a number
of relatives both with and without the disease.
Privacy and confidentiality
Any information that is obtained in connection with this
study, and that can be identified with you will remain confidential
and will be disclosed only with your permission or as required
by law. Only the researchers identified, or colleagues who
will sign legal agreements not to disclose details, will be
allowed access to any potentially sensitive research information
from these DNA studies. Your blood or tissue sample, and the
DNA information generated from this sample, will be kept in
a potentially identifiable form (that is, it will be coded).
If you chose to withdraw from the study, your blood or tissue
sample and DNA information will either be de-identified or
destroyed depending on what you choose.
If you are
interested in DNA Donation, more information can be provided
by contacting Ph(02) 9399 1104
Key researchers
Peter Schofield, Glenda
Halliday, William
Brooks, Yue Huang
Collaborators
John Kwok (Garvan Institute), Dominic Rowe (University of
Sydney, Royal North Shore Hospital)
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