Alzheimer Disease Clinical Trial
Official title:
Risk Evaluation and Education for Alzheimer's Disease
The purpose of this study is to provide healthy adults with genetic testing and information about their chances of developing Alzheimer's disease.
Alzheimer's disease is a common condition affecting memory and thinking. Genes can sometimes
be used to provide risk estimates for the eventual development of certain common diseases.
Apolipoprotein E (APOE) is one gene that has been identified which can provide information
about a person's chances of developing Alzheimer's diseases. Previous research explored the
behavioral and psychological impact of receiving genetic risk information for Alzheimer's
disease (AD). The REVEAL I Study, funded in 1999, showed that an Alzheimer's disease genetic
risk assessment can be given to relatives of people with AD in a safe way. REVEAL II, which
was funded in 2003, demonstrated that this same information can be given in a condensed
education and counseling protocol without causing severe psychological harm. REVEAL III will
further study different ways of providing genetic risk information for Alzheimer's disease.
Participation in this study will entail an initial screening phone call to determine
eligibility, followed by a phone interview which will ask about demographic information and
thoughts and feelings about AD. Participants will complete a mailed survey. Following
completion of the survey, a genetic counselor will meet with the participant at the clinic to
review family and medical history, administer additional questionnaires asking about AD and
genetic testing, and draw blood for genetic testing. Results will be disclosed either in
person or over the phone about 3 to 4 weeks later. The genetic counselor will make a brief
follow-up phone call 1 week after that. The participant will visit the clinic twice to
provide additional information, at 6 weeks and 6 months after disclosure. Finally, the
participant will complete a mailed 12 month survey, and the genetic counselor will make a
brief follow-up phone call.
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