Difference between revisions of "Mindcrowd.org"

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Revision as of 19:50, 22 September 2015

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 genetics of how the human brain remembers things. Specifically, 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 have to take three tests and then you will receive the results of your tests. 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. In some future studies, you may be asked to provide a saliva sample. Dr Huentelman will get your DNA from your saliva. 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. How old do I have to be to participate? You must be 18 years or older to participate in this study. Are there any risks? There are no physical risks involved in participating in this study. 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 feedback about the memory tests you will take and how your results compare with other people who do 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 compensated 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. 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 Dr. Huentelman at mhuentelman@tgen.org 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 mhuentelman@tgen.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 researcher? If you have questions about your rights in this research study, please contact: the Western Institutional Review Board [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 Stephanie Buchholtz in the TGen Office of Research Compliance at sbuchholtz@tgen.org or 602‐343‐8479. 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 recontacted in the future through email to participate in additional research studies. 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.