Please read the following information carefully before deciding
whether to participate in this research study.
This activity is part of a research study conducted by Dr.
Matthew Huentelman at the Translational Genomics Research Institute
(or TGen) in Phoenix, Arizona.
The purpose of this research study is to understand the factors
that influence how the human brain remembers things. These factors
might include your lifestyle choices, your family history, and your
genetic make-up. Additionally, we want to know how the way we
remember things might change as we get older. If we know the way
people's memory changes when they get older, we may be able to
understand what changes occure in people who have a brain disease
that affects their memory (like Alzehimer's Disease).
What will I have to do?
You will take two tests, provide demographic information, and
answer a few study-related questions. We would like to use the
information you provided and your test results to create a
"Registry" or group of people that we may contact again for future
studies on memory. Most future studies will be performed
In some future studies, you may be asked to provide a dried
blood spot, saliva, or cheek swab sample. Dr. Huentelman will
get your DNA from your sample. DNA is a substance that is
found in every cell in the human body. Genes are part of DNA and
are a "blueprint for life." In future studies, Dr. Huentelman
may look at your genes and your testing results to understand more
In order to contact you
for participation in future studies, you will be asked at the end
of this consent form to provide your name and email address.
Dr. Huentelman will contact you through email to see whether
you are interested in participating in future memory studies.
At that time, you will be given a new consent form that will
describe the new study that is similar to this consent
If you choose to
provide your name and email address to be contacted for future
studies, you may be asked to complete an online questionnaire that
addresses topics such as lifestyle or medical history.
How old do I have to be to participate?
You must be 18 years or older to participate in this
What are my alternatives to being in this
This is not a treatment study. Your alternative is not to
Are there any risks?
There are no physical risks involved in participating in this
study. Some of the questions we ask may make you uncomfortable. You
can decline to answer any question for any reason. Please keep in
mind that you are free to end the study at any time.
What do I get out of it?
You will receive your results from the memory test
you will take and see how your results compare with other people
who did this activity. We will also explain what we hope to learn
from this research. The final results from this experiment will be
posted on the Results page.
Will I get paid and does it cost me anything to
There will be no cost to you if you participate in this study.
You will not be paid for your participation in this study.
Will you share my information with other
We will not share any information that you give us. All of your
information is stored in a database. If you decide to give us your
name and email address, they will be stored separately from your
other personal data and test results. Names and email addresses
will be uploaded into email communications software that is run by
a third-party provider and stored on secure servers so that we can
contact you in a consistent, effective manner. Our service provider
will not contact you, nor will they share your information. All of
our databases are password-protected and secure. No one can
identify you without access to both of these data sources.
What if I change my mind and don't want to participate
in the study anymore?
Your participation in this study is completely voluntary.
You may stop participation at any time during the research
activity. You can contact the Study Coordinator at
email@example.com to withdraw from the study.
What if I have questions or
If you have any questions or comments about this activity, please
contact Dr. Matt Huentelman at firstname.lastname@example.org. Please go to
this web page to find
out more about the people involved in this research.
What if I have questions about my rights in this research, have
a complaint, or want to report a problem to someone besides the
If you have questions about your rights in this research study,
please contact the Western Institutional Review Board at:
Telephone: 1-800-562-4789 or 360-252-2500
The WIRB is a group of people who protect the rights of people
involved in research studies.
For questions, concerns, suggestions, complaints that are not
being addressed by the research team, or in case of
research-related harm, please contact the TGen Office of Research
Compliance at email@example.com.
How do I agree to participate?
By ticking the box next to "I have read and understand...," you
are saying that: (1) You agree to take part in this research. (2)
You feel like you understand what is involved in this study.
(3) You understand that you are free to leave the study at
Will you contact me in the future?
You may be recontacted in the future through email to
participate in additional research studies or take the memory test
again. Participation in future studies is completely
I agree to take part in this research. I feel that I understand
what I am getting into, and I know I am free to leave the
experiment at any time.