An online platform for participant-driven sharing of brain scans and psychological data
Purpose and Overview
Thanks for your interest in our study. Before you begin the study, we would like to inform you about what this research involves and of any potential risks and/or benefits of your participation.
My Brain and Me is a site where you can learn more about neuroscience and your brain while enabling scientists to learn about how the brain works. The site is directed by Dr. Spiro Pantazatos in the Brain Imaging Lab in the Molecular Imaging and Neuropathology Division at the New York State Psychiatric Institute. If you previously had a structural brain MRI scan for research or clinical purposes, you can upload it to our site. Your data will contribute to a growing neuroscience resource that will be available to scientific researchers around the world. At the same time, you will have an opportunity to view and explore your own anatomically labeled brain scan in your web browser. We also aim to increase public awareness and education of neuroscience. There are no direct benefits from participating in this study.
Participation in this research study is voluntary. You are free to withdraw consent and stop participating at any time.
You will complete a brief personal profile and upload a digital copy of your MRI. You may also be asked to complete brief surveys or tasks in your web browser. These surveys take 5-10 minutes to complete. You can take a break in between each survey or task. Some tasks may measure things like your reaction time in response to pictures. Other tasks ask you questions about your emotions, feelings, life experiences, and habits. We may contact you in the future to ask if you are interested in completing additional tasks. After uploading your MRI scan, you will have the opportunity to view it in a web-browser. Our site will label brain regions so that you can learn brain anatomy on your own brain. Site visits involving a study recruiter will be conducted remotely using the telephone or HIPAA-compliant video teleconferencing.
Risks and Inconveniences
There are no physical health risks associated with this study. Any changes in our study that may affect your willingness to continue participation will be communicated to you promptly.
Participation in our study is associated with potential information risks. As with any research that requires uploading data, there is some risk to your personal identifying information. We will to the best of our ability protect your data from any security breaches. However, we cannot guarantee against any breach. We believe that the security threat to your personal identifying information is low.
You will not receive any medical or clinical benefit from participating in this study. Through participating in this study, you will have the opportunity to learn more about neuroanatomy and neuroscience using your own brain. Please note that you will not learn anything about your brain specifically through participating in this study. Rather, you may learn about the names of different parts of the brain, displayed on your own brain model. You will also contribute to the scientific community’s understanding of how the brain works.
Your MRI and other information will be kept in a secure database. Your de-identified data may be shared with other researchers for future research studies. Your privacy is protected because shared data will not include any identifying information about you.
Your de-identified data may be used for commercial profit in the future. You will not share in any profits. You can delete your scan data from our servers at any time with the click of a button. You may contact us to request that we delete your account and any backup copies of your data.
Any identifying information about you such as your email address is collected via the internet using SSL encryption. Such identifying information is stored in password and firewall protected, HIPAA-compliant databases and servers. Visits involving study recruiters will use HIPAA-compliant video conference software.
This research is covered by a Certificate of Confidentiality from the Department of Health and Human Services. This means we will not share your information with anyone else without your permission. An exception is if there is a law that requires us to share your information. Some examples are laws that may require us to report child abuse, plans to harm yourself or others, or contagious diseases. However, this exception does not apply to any legal proceedings. This exception does not apply if you give your permission to share your data. This exception does not apply if your data is used for other scientific research. This is allowed by federal regulations protecting research subjects.
A Certificate of Confidentiality does not prevent you or a family member from sharing your data with others. If you give written permission, then we may share your data with others. We may share your data if it is requested by groups that are funding this research. These funders include people from state or federal agencies. Your data may also be shared if it is needed by the federal Food and Drug Administration (FDA). Your information will be available to research staff. Your data will also be available to people from state and regulatory institutions. These people may review your data as part of routine audits.
You will not be paid for your participation in this study.
In Case of Injury
Federal law requires that we inform you about our institution's policy regarding compensation and payment for treatment of research-related injuries. If you believe that you have sustained an injury as a result of participating in this research study, you may contact the Principal Investigator at (646) 774-8710. We will review the matter and identify the medical resources that may be available to you.
If you have any questions, there may already be an answer at our FAQ. Dr. Spiro Pantazatos, PhD is the primary investigator in charge of this study. Dr. Jeffrey Miller, MD is a co-investigator. Members of the research team will answer to the best of their ability any questions that you may have now or in the future about the research procedure or your response to study procedures. If you have any questions, you may contact the primary investigator at 646-774-8710 or by email at email@example.com.
If you have any questions about your rights as a research participant, want to provide feedback, or have a complaint, you may call the NYSPI Institutional Review Board (IRB). An IRB is a committee that protects the rights of participants in research studies. You may call the IRB Office at (646) 774-7155 during regular office hours or send an email to IRBMail@nyspi.columbia.edu.