If you are a study participant, please contact the study hotline (1-855-644-4853). You may also make a request in writing by mailing it to the address below. Please make sure to sign your request and provide detailed contact information. Please be specific about the information or tests you are requesting. If you are an attorney requesting records on behalf of your client, please mail a request to the GuLFSTUDY office at the address below. Your request should include a letter explaining what you are requesting, and a notarized, HIPAA compliant medical request form signed by the relevant study participant.

GuLFSTUDY
4505 Emperor Blvd
Suite 400
Durham, NC 27703

The GuLF Study collects information from study participants about their exposures and health. Much of this information is self-reported by participants in structured telephone interviews. Questionnaires can be found here. Some clinical tests were carried out during home and clinic visits for those who participated as described here. The information from these tests and interviews are not full medical records, but rather self-reported data and results from clinical tests that were carried out for research purposes during participant visits.

The GuLFSTUDY collects information from study participants about their exposures and health. Information is collected as part of a research study and is not related to clinical care. Although the information retained is not a medical record per se, some medical tests were performed. Results of some tests were provided to participants at the time of the home or clinic visits.

Researchers at the National Institute of Environmental Health Sciences (NIEHS) are running the study. NIEHS is one of the National Institutes of Health (NIH), which is part of the Department of Health and Human Services. The website for the NIEHS is http://www.niehs.nih.gov. Dr. Dale Sandler, Chief of the NIEHS Epidemiology Branch, is the study’s principal investigator.

Social & Scientific Systems, a professional company that specializes in health research, works closely with the NIEHS to recruit, enroll and follow people in the study. They collect data and manage the day-to-day activities of the study. More information about SSS can be found at www.s-3.com.

BP is not involved in this study. They were not involved in the design of the study and play no role in carrying it out or analyzing the study data. Shortly after the spill, BP donated money to the National Institutes of Health to fund health research related to the oil spill. Some of the money that BP donated was used to start the GuLFSTUDY. However, most of the money for the study comes from the NIH directly.

More than 100,000 people did work related to clean-up of the oil spill in the Gulf of Mexico. This study will learn how different aspects of oil spill response and clean-up may impact future health. The study can also learn how stress and job loss because of the oil spill can affect health, including mental health. The findings from the study may influence long-term public health responses in Gulf communities or responses to other oil spills in the future.

Even people not directly involved in response or clean-up may have been affected by the spill, especially if they were living in the region at the time. Furthermore, by comparing workers with exposures or experiences of interest to others who did have those exposures, we can learn if health problems are occurring at a higher rate than expected among some groups of workers.

Even workers who received training and tried to follow all the guidelines given to them may have had oil spill exposures. Heat and humidity made it hard to follow some guidelines. Safety procedures often reduce, but do not fully eliminate, certain exposures. The training and safety procedures were based on what was known at the time of the spill. There have been few studies about the potential risks of oil spill clean-up. It is very important to study the health of people who did clean-up. This will help identify any concerns for people who were exposed to the oil. It will help officials know what to do if there is another spill.

The goal of this study is to identify diseases related to oil spill response and clean-up activities. The study will look at a wide range of health conditions. We will follow workers for a long time so that we have a chance of finding out about diseases that take many years to develop. The study is large enough to identify many diseases, even ones that are less common. But it may not be possible to identify diseases that are very rare.

Participating in this study will give you a chance to share your experiences during and after the oil spill clean-up. Most people who participate in research hope that it will produce information that will benefit themselves or others. In this case, people in the study may want to help public health officials and health care providers understand the potential health impacts of the oil spill on clean-up workers and local communities. They may want to help researchers and officials plan for how to respond if there are other large oil spills in the future.

The information you have already provided will help us understand the short-term effects of the oil spill. But, it is only by continuing to take part in the study, that you can help researchers and officials understand the long-term effects of the Deepwater Horizon Oil Spill.

Research funded by the Federal Government is carefully reviewed and monitored. The NIEHS Institutional Review Board (or IRB) is responsible for making sure the study is safe, ethical, and scientifically sound. The IRB is a diverse group that includes experts in the areas of ethics, law, medicine, and science. In addition, this study has been reviewed by many expert groups, including The National Academies of Sciences, Engineering and Medicine: Health and Medicine Division (see http://www.nationalacademies.org/hmd/), an independent, non-profit group that works outside the government. This group gives unbiased and authoritative advice to decision makers and the public. The input received from the overall review process has been used to improve the study.

Newsletters describing the progress and findings of the study will be mailed yearly to people in the study. These reports also will be posted on the study website and mailed to interested individuals and community groups. Results of the study will be reported in publications that are read by physicians, public health professionals, and scientists and summarized on the study website. Local, state, and national media groups will also be informed of study findings. From time to time we will hold community meetings and press conferences to report results.

Social Security number allow us to accurately link to outside records containing information on deaths, cancer, and other diseases. Although you will have given other identifying information such as your name and date of birth, especially for common names, the Social Security number is the only factor that is unique to you and will allow us to make sure we get the correct information about changes in your health. We will store your Social Security number in a separate secure file and will not share it with others. If you are still reluctant to share your Social Security number, we will ask you to provide the last 4 digits. This will help match to the records that are most likely yours, even though it does not uniquely identify you.

During our initial telephone interview, we asked for your address, phone number, and date of birth to verify that we have contacted the right person for the interview. This information allows us to contact you about important study follow-up activities like home visits, follow-up telephone interviews, and clinical visits recently completed and any future follow-up activities. Your contact information lets us send you the annual newsletter and other study mailings so you can learn about the study findings.

We will make every effort to protect your privacy and keep your data confidential. People in NIH studies are not named in reports or presentations. Furthermore, a law called The Federal Privacy Act protects your information. We store information from your interviews and exams with a special code number instead of your name so you will not be identified. Only authorized staff will see your private information.

For added protection, the study has a Certificate of Confidentiality which helps us protect the privacy and confidentiality of people in the study. The Certificate helps to prevent us from being forced to give out information that could identify you in a court of law. A Certificate of Confidentiality does not prevent you from giving out information about your own involvement in this study. If you want us to send information about you to a doctor, insurer or employer, you must request this from us in writing.

Data we collect may be shared with other qualified researchers, but we will do everything we can to protect your privacy.

We expect that people in the study will move or change their telephone number and forget to tell us. Since this is a long-term study, we want to make sure we can reach you in future years. If we have trouble reaching you, we will call the contacts you’ve provided to find out where we can reach you. Please select people who will always know where you are in case you move.