ANGI Study: Questions and Answers

Why am I being asked to participate in this study?
You previously participated in the Imaging Dementia – Evidence for Amyloid Scanning (IDEAS) Study. Because you participated in IDEAS, you are now eligible to participate in another research study called Amyloid Neuroimaging and Genetics Initiative (ANGI).
What is the goal of ANGI?
The goal of the ANGI study is to pair the clinical information and brain imaging (amyloid PET scan) collected in IDEAS, or other related studies, with DNA obtained from saliva samples. It is hoped that the research made possible by ANGI will ultimately lead to the development of new therapies that will slow or prevent cognitive impairment and dementia.
What is DNA?
DNA is the genetic material in our body. DNA is made up of a series of genes. Genes are the unit of our DNA that determine things such as eye color, hair color, and other more complex physical characteristics or traits. In this study, we will be obtaining DNA from a saliva sample.
Where will my sample be stored?
Your sample will be stored at the National Cell Repository for Alzheimer Disease (NCRAD), which is located at Indiana University. More information about NCRAD is available at www.ncrad.org.
How many people will take part in ANGI?
There will be several thousand subjects participating in ANGI.
What organizations are funding ANGI?
ANGI is funded by the Alzheimer’s Association and the National Institute on Aging (NIA).
What will I be asked to do if I participate in ANGI?
You will be asked to read and sign an Informed Consent (IC) form, share your contact and demographic information, and provide a saliva sample.
Where will I go to participate in ANGI?
You can participate in ANGI without leaving your home.
Who will have access to my DNA?
Your deidentified DNA may be provided to researchers at academic institutions, hospitals and biotechnology/ pharmaceutical companies.
Will researchers who receive my DNA know who I am?
Only deidentified (all identifying information has been removed) DNA samples will be provided to researchers.
Will I be given results of DNA analysis?
As this is done for research purposes, you will not be given the results of any DNA analysis.
Are there any risks involved with participating in ANGI?
Risks of participating in ANGI are minimal. There is a slight risk that someone could break the security of the study’s computer system and find your information, causing a loss of confidentiality. Another possible risk involves loss of privacy as a result of providing genetic material (DNA) for research. Safeguards are in place to minimize this risk.
Are there any risks to my family?
Risks to your family are minimal. Although your genetic information is unique to you, you do share some genetic information with your blood relatives and other members of your ethnic group. While information traditionally used to identify you will not be released, people may develop ways in the future that could allow someone to link your genetic or medical information back to you. Safeguards are in place to minimize this risk.
Are there any benefits involved with participating in ANGI?
Although you will not receive any direct benefit from your participation in ANGI, your involvement in this study may provide additional information regarding the possible cause(s) of cognitive impairment or dementia.
Will participation in this study affect my health insurance?
No. This research follows the Genetic Information Nondiscrimination Act (GINA), a federal law that generally makes it illegal for health insurance companies, group health plans, and most employers to request the genetic information we get from this research and to discriminate against you based on your genetic information.
Will I be paid for participating in ANGI?
You will not be paid for your participation in ANGI.
Are there any costs to participate in ANGI?
There will be no cost to you to participate in ANGI. The forms and saliva kit will be sent to you at no cost. All costs to mail the saliva kit and study forms to Indiana University will be paid by the study.
Who can I contact if I have questions about participating in ANGI?
If you have any questions about ANGI, you may contact the study coordinator at (800) 526-2839.
Can I withdraw from ANGI?
Participation in ANGI is completely voluntary. You may decide to stop your participation in ANGI at any time. Your decision to withdraw from participation in ANGI, does not withdraw your participation in the IDEAS study or any other related studies.