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 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 occur in people who have a brain disease that affects their memory (like Alzheimer'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 online.
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 about memory.
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 form.
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, diet, or medical history.
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?
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 your participation in 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 participate?
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 people?
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 protected] to withdraw from the study.
What if I have questions or comments?
If you have any questions or comments about this activity, please contact Dr. Matt Huentelman at [email protected] 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 researcher?
If you have questions about your rights in this 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 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 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 anytime.
Will you contact me in the future?
You may be re-contacted in the future through email to participate in additional research studies or to take the memory test again. Participation in future studies is completely voluntary.
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.
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.tgenfoundation.org