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Questions about the Exposome Survey

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What is the Environmental Polymorphisms Registry (EPR) Exposome Survey all about?

The term ‘Exposome’ refers to exposures, including lifestyle factors, which occur over an individual’s lifetime. It is a comprehensive measurement of all external and internal exposure events from conception to death. The EPR Exposome Survey is gathering information from adult EPR participants to help researchers understand how our environment, diet, lifestyle, and other factors interact with our own unique genetic or physical characteristics to affect our health.

What will the survey tell us and how will information be used?

Data from the EPR Exposome Survey will be combined with data and blood samples you already provided to help understand your lifestyle and the potential exposure to different chemicals and other factors in your life. We will use all of this information to learn how our genes and environment interact to increase or decrease risk for common diseases and conditions. Information from the survey will also help researchers design follow-up studies and select participants who may be eligible for these studies. As we discover more about how our genes and environment work together, scientists can develop new strategies to prevent and treat common diseases such as cancer, diabetes, and heart disease.

Who is included?

The EPR Exposome Survey is being offered to all active EPR participants who are at least 18 years old. You joined the EPR at one of our recruiting sites (e.g. community event or outpatient clinic) and agreed to be contacted about participating in follow-up studies, which includes surveys.

What am I expected to do?

This part of the study involves completing a two-part survey and updating or confirming your contact information. The first part of the survey asks about external exposures, including environmental exposures at home, at work, and in your leisure activities. The second part asks about internal exposures, including vitamins, medications, physical activity, sleep, diet, and family history. Since this is a long-term study, confirming or updating your contact information helps make sure we will be able to reach you in future years.

How long will it take to complete the survey?

Part A of the EPR Exposome Survey takes approximately 30 minutes, Part B takes approximately 40 minutes, and confirming or updating your contact information takes approximately 5 minutes. Thus, the whole survey will take about 75 minutes.

Why is it important for me to participate in the EPR Exposome Survey?

We believe the EPR Exposome Survey will give us valuable information about the way our genes and our environment work together to increase or decrease our risk for disease. Everyone’s life experiences are different although people from all walks of life may have common experiences or characteristics that increase their chances of developing a disease or health condition. It is important that participants with different backgrounds and lifestyles participate in the survey so that the results will apply to everyone. We will also use the results to design follow-up studies and select participants who may be eligible. Thus, obtaining survey answers from as many EPR participants as possible helps ensure the success of these future follow-up studies.

Most people who decide to participate in research do so expecting it may bring new findings, such as the role of genetics in disease, which will benefit them or others. Many people who participate in this kind of research do so because they want to help others. In this case, participants may want to help learn how to prevent or treat common diseases. They do it for themselves, but also for their family members and future generations.

What are the risks of taking the EPR Exposome Survey?

There is the potential risk of loss of confidentiality. Every effort will be made to keep your information confidential however, this cannot be guaranteed. Information about the precautions we take to protect your privacy is provided below.

How will my privacy be protected?

All of the EPR staff sign confidentiality forms and undergo training in research ethics. We have put in place several protections for the privacy of your data. When you complete your survey, your answers are labeled with an ID number and stored separately from all personal identifiers, such as your name, address, and telephone number. Your personal contact information is kept in separate files accessible only to EPR staff on a need-to-know basis. All data are kept in password-protected databases on secure computers in a locked facility. You will not be identified in any report or publication resulting from this survey.

To help us protect your privacy, we have obtained a Certificate of Confidentiality that helps us protect the confidentiality of your data against compulsory legal demands (e.g., court orders and subpoenas) that seek the name or other identifying characteristics of a research subject. With this Certificate, researchers cannot be forced by anyone to give out information that could identify you. Confidentiality Certificates are issued by the U.S. Department of Health and Human Services to provide privacy protection to research subjects. These certificates are authorized by law in provision 301(d) of the Public Health Services Act (42 U.S.C. Section 241(d)). A Certificate can be used by the researcher to avoid compelled "involuntary disclosure" (e.g., subpoenas) of identifying information about a research subject.

A Certificate of Confidentiality does not prevent you or a member of your family from voluntarily releasing information about yourself or your involvement in this research. If an insurer, employer, or other person obtains your written consent to receive research information, then the researchers may not use the Certificate to withhold that information. This means that you and your family must also actively protect your own privacy. We will keep your participation in the EPR confidential to the extent permitted by law. However, it is possible that other people may become aware of your participation in this study without your permission, for example, if it is required by the Food and Drug Administration (FDA), members of Congress, law enforcement officials, or other authorized people.

What if I do not want to take the EPR Exposome Survey?

Completing this survey is completely voluntary. Your decision to complete the survey will not affect your overall participation in the EPR. If you decide that you do not want to take the EPR Exposome Survey, please call the EPR toll-free number, 1-866-809-1261, and let us know so we can avoid sending you survey reminders.

How can I find out more about the survey or the EPR?

If you have questions about the Exposome Survey or the EPR, you may contact the EPR study team at the following toll-free number, 866-809-1261, or by email at: info@eprdna.niehs.nih.gov.