The fine print.
Relax, it's just a standard consent form
The study you are about to participate in is a serious, scientific study. As such, we ask that you please read the following information carefully before deciding whether to participate in this research study.
Your personal information will not be shared and your test data are safe and secure.
Please read the following information before accepting to participate in this research study.
This memory test 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 scientific research study is to understand the factors that influence human memory, such as your lifestyle choices, your medical family history, and your genetic make-up. Additionally, we want to understand how memory changes as we age. If we understand how memory changes in healthy people as they get older, we may be able to understand the changes that occur in people who have a memory-impairing brain disease (like Alzheimer's disease).
What will I have to do?
You will take one attention test and one memory test, and answer a few study-related questions.
How long does this test take?
It typically takes less than 10 minutes.
How will you use my information?
The information you provide and your test results will be used to study, analyze and understand how memory works in healthy people.
We may contact you again for future brain studies. Most studies will be performed online.
How old do I have to be to participate?
You must be 18 years or older to participate in this study.
What are my alternatives to being in this study?
This is not a treatment study. Your alternative is not to participate.
Are there any risks?
No. There are no risks associated with taking the brain tests. Some of the questions we ask may make you feel uncomfortable. You are free to decline to answer any question for any reason. You are also free to end your participation in the study at any time.
What do I get out of it?
You will receive your results from the memory test and see how your results compare with those of other people who also took the test.
Will I get paid?
No. You will not be paid for your participation in this study.
Does it cost me anything to participate?
No. Taking the Attention and Memory Tests are free.
Will you share my information with other people?
If you choose 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 stored in secure servers and run by a third-party provider so that we can contact you in a consistent, effective manner. Our email 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.
Sharing research data with other scientists is an important part of the research process and helps advance scientific progress. We will share de-identified data from this study with other researchers to help further research into the human brain.
If you consent to participate in a MindCrowd collaborative study (or have previously done so), we may share or receive identifiable data such as your name or email address with our collaborative partners. This would only be done to link your MindCrowd data to your collaborative study data.
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 choose not to participate or you may stop participation at any time during the research activity without penalty or loss of benefits to which you are otherwise entitled. You can contact the Study Coordinator at [email protected] to withdraw from the study
What if I have questions or comments?
If you have any questions, concerns, complaints, or comments about this activity, please contact Dr. Matt Huentelman at 602-343-8653 or [email protected] Please go to this web page https://www.tgen.org/faculty-profiles/matt-huentelman/ 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 researcher?
If you have questions about your rights in this research study or if you have any questions, concerns or complaints about the research study, please contact the Western Institutional Review Board at:
[email protected] or
Telephone: 1-800-562-4789 or 360-252-2500
The WIRB is a group of people who perform independent review of scientific research.
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 protected]
How do I agree to participate?
By ticking the box next to "I have read and understand...," you are saying that: (1) you realize that this short test cannot diagnose or predict future risk of Alzheimer’s disease, (2) you are 18 years of age or older and (3) you have read and understand the information above and I want to participate in this research and continue with the study.
Will you contact me in the future?
You may be contacted in the future via email to offer you to participate in new scientific research studies or to take the memory test again. Participation in any of our studies is completely voluntary.
I agree to take part in this scientific project. I have read and understand the information above, and I know I am free to leave the experiment at any time.
If you would like a copy of the consent form for your records, click here to print one.
If you would like to find out more about TGen and the research it does, please visit: www.tgen.org
If you would like to donate money to TGen and its research, please visit: www.tgen.org/support-our-science/