The Agricultural Health Study is a study of licensed pesticide applicators (farmers) and their spouses in Iowa and North Carolina. The goal of the study is to answer important questions about how agricultural, lifestyle, and genetic factors affect the health of farming populations. The Agricultural Health Study began in 1993 and has been continuing ever since. Investigators from the National Cancer Institute, the National Institute of Environmental Health Sciences, the Environmental Protection Agency, and the National Institute for Occupational Safety and Health are participating in the study.

More than 89,000 farmers and their spouses in Iowa and North Carolina have participated in the Agricultural Health Study. Their participation has provided, and continues to provide, the data that researchers need to help the current and future generations of farmers and their families live healthier lives. For more information about the Agricultural Health Study, please go to: https://aghealth.nih.gov/.

1. Please go to elea.cancer.gov
2. Enter the unique PIN that is printed on the letter that you received in the mail.
3. Create an account using your email address
4. Read and sign the consent form
5. Once you consent, you will be directed to the place on the website where you can complete the survey.

Information you provide to us will be kept confidential. Only the primary research team will know that you are participating. Any information you provide will be identified by a number (not your name) and stored securely.

When data are entered into computer files for analysis, your answers will be identified only by a number. The personal information that you provide (for example, name and address) will be removed from your data file.

We are looking at early life exposures to help inform future generations about cancer and other health outcomes. We might also work with other investigators interested in research about health outcomes. We will do this in a manner consistent with all applicable federal and state laws and regulations and not release any information that can identify you.

To advance science, researchers share de-identified information they get from study data. They do this by putting it into one or more scientific databases after removing identifiers such as your name and address. Researchers can access and combine information from many studies to learn even more about health and disease, after the researcher has gone through a scientific and data security review and approval process.

Privacy laws prohibit release of personal information that could be used to identify participants in research projects such as the ELEA Study. To protect privacy, your name is separated from the information you provide, and a number is used instead. Your name and other personal identifying information are saved in encrypted files.

There is a small chance that participation in the ELEA Study may involve a loss of privacy if someone who is not authorized gets access to the data we have stored about you. We will make every effort to prevent this from happening.

Studies like this one provide an important opportunity to collect information on factors that may affect risk of disease but participating may not benefit you directly at this time. Many people who volunteer do so with the hope that health research may improve our understanding of health outcomes and ultimately advance science and improve medicine. Other people hope that there will be a benefit for their children.

The research team, comprised of researchers from the National Cancer Institute, University of Iowa, and Westat, meet regularly to discuss the study operations and address any issues and concerns. The research team works to ensure scientific validity and sound methodology.

If you have questions, concerns, or complaints about your rights as a research subject or about research related injury, please contact the NIH Office of IRB Operations at 301-402-3713. You may also contact Westat Human Subjects Protections Office, by calling 1-888-920-7631. Please leave a message with your full name, the name of the research study that you are calling about (the Early Life Exposures in Agriculture, or ELEA Study), and a phone number beginning with the area code. Someone will return your call as soon as possible. To offer input about your experiences as a research subject or to speak to someone other than the research staff, call the NIH Office of IRB Operations or the Westat Human Subjects Office at the number above.