Att L - Participant Consent

Attachment L. Informed consent. (ATSDR Letterhead)

Reading level: 8.7

Introduction and Purpose

The Agency for Toxic Substances and Disease Registry (ATSDR) is doing a health survey of persons who lived or worked at Camp Lejeune or Camp Pendleton in 1985 or before. The ATSDR Health Survey of Marine Corps Personnel and Civilians is funded by the U.S. Navy and the Marine Corps. ATSDR is doing this research to learn more about the health effects of workplace and environmental exposures. The survey asks you about when and where you lived or worked at Camp Lejeune or Camp Pendleton. It also asks about your work history and your health.

Procedures

• If you agree to take part, please read and sign this consent form and complete the following survey. If you prefer, you can provide your consent on-line and answer the survey at www.xxx.com. The survey should take about 45 minutes to complete.

• If you report certain health conditions, you may be re-contacted at a later time to ask for your written permission to review your medical records. Your medical records will be used to confirm your health conditions.

Risks and Benefits

Data are collected through a mail questionnaire or the internet with minimal risk to participants. Some of the questions are personal, like questions about your health. Answering the survey is voluntary. If you choose not to take part, there will be no penalty. You will not lose any benefits if you decide not to participate.

There are no direct benefits from taking part in this survey. However, taking part in this survey will help us learn more about ways to improve health and prevent disease in the future.

Confidentiality

Information from the survey will be used for research purposes only. All answers you give will be kept private to the extent permitted by law. We do not plan to share your information with anyone other than ATSDR staff and its contractors. Data that identify you or where you live will not be included in any report. All information from the surveys will be kept in a locked file. Data will be stored separately from any personal identifiers.

If you complete the survey on-line, your privacy will be maintained to the degree permitted by the technology used. Security measures will be taken to protect data submitted over the internet. These include Secure Socket Layer (SSL) encryption and password-controlled servers with limited access.

If you have any questions about this study, please contact the Health Survey Information Line at xxx-xxx-xxxx. If you have questions about your rights as a participant in this research study, please contact CDC’s Human Research Protection Office at 1-800-584-8814.  Please leave a brief message with your name and phone number, and mention that you are calling about CDC protocol #5536.   Someone will return your call as soon as possible.

Participant Consent

I have read or have had read to me the description of the ATSDR Health Survey of Marine Corps Personnel and Civilians. I have been informed of the risks and benefits of the survey.

My rights as a research subject have been explained to me. The purpose of the survey and how it is being done have been explained to me. I understand that I have the right to refuse to answer any question or refuse to complete the survey. I voluntarily agree to take part in this survey.

____________________________________________________

Your name (please print)

____________________________________________________

Your signature

____________________________________________________

Date

I agree to potentially being re-contacted by ATSDR regarding participation in future studies about Camp Lejeune. I understand that agreeing to be contacted in the future is voluntary.

□ Yes I agree

□ No I do not agree

____________________________________________________

Your name (please print)

____________________________________________________

Your signature

____________________________________________________

Date