Attachment 6 Advance Letter

Attachment 6

Advance Letter

640 North LaSalle Street, Suite 640  Chicago, Illinois USA  60610-3781  312 867-4000 telephone  312 867-4200 facsimile

[DATE]

[NAME]

[ADDRESS]

[CITY, STATE, ZIP CODE]

Dear NAME:

I am writing to ask for your continued help with an important health study. Between 2004 and 2005, you took part in a study of fatiguing illness in Georgia. The Centers for Disease Control and Prevention (CDC) is conducting a follow-up research study. We appreciate your participation, and we would like to invite you to take part in the follow-up study.

The public health of the country is important to all of us. Thousands of people are limited in the amount of time they can spend at work or with family because of fatiguing illness. For that reason, CDC would like to learn more about the causes of fatiguing illness. This information may help in treating and preventing such illnesses.

Within the next few weeks, we will call you to conduct an interview. The interview will take about 20 minutes. It contains most of the questions asked during your last interview. We need to interview both fatigued and non-fatigued people. You may choose not to answer any question. All information you give will be kept private and used only in summary form.

More information about this study is on the back of this letter. If you have any questions about this study, or if your telephone number has changed since we last spoke with you, please call Abt Associates, toll-free, at 1-800-786-4816.

We hope you will agree to continue to be part of this important health study. Thank you in advance for your help.

Sincerely,

Scott Royal

Project Director

What is the Centers for Disease Control and Prevention (CDC)?

CDC is sponsoring this research study of fatiguing illness. CDC, located in Atlanta, Georgia, is a federal agency responsible for protecting the health and safety of the nation. CDC studies health problems to treat and prevent illnesses.

What is Abt Associates?

CDC has chosen Abt Associates to conduct the interviews for this study. Since 1988, Abt Associates has helped CDC with many CFS studies. Abt Associates has telephone interviewers in Hadley, Massachusetts, and field staff across the US.

What is CFS?

CFS stands for chronic fatigue syndrome. CFS is a poorly understood illness. People with CFS have bad, long-lasting fatigue. This fatigue cannot be explained by another medical or psychiatric problem. They also have many other symptoms that their doctors cannot explain. The cause or causes of CFS have not been found. There is no test that can be given for CFS. CFS is diagnosed by ruling out other illnesses as the cause of the fatigue.

How long will the telephone interview take?

The interview should take about 20 minutes.

Can a friend or relative take my place?

Another person cannot take your place in this research study.

How can I find out more about fatiguing illnesses?

You can visit CDC’s Chronic Fatigue Syndrome website: www.cdc.gov/ncidod/diseases/cfs

How do I know my information will be kept private?

Privacy is mandated by law. Only researchers at Abt Associates will know your name and other information that identifies you. They will not share this information with CDC. All staff at Abt Associates sign pledges of confidentiality. They may be fined and imprisoned if they reveal any private information.

Study results will be published only in summary form. US law requires that your name not be linked with any information you provide.

What happens if I change my mind about participating?

Your participation is voluntary. This means you can choose to take part or not. It also means that you can stop taking part at any time. If you want to stop being in this study, please let Abt Associates know. You may also tell the Abt Associates interviewer when he/she calls you.

Whom can I call to find out more about this study?

If you have more questions about this study, call Dr. Jim Jones at CDC. Dr. Jones’ number is: 1-404-639-3748. Please note that calls to this telephone number may be toll calls.

If you have questions about your rights in this research study, please call CDC's Deputy Associate Director for Science, toll-free, at 1-800-584-8814. Please leave a brief message with your name and phone number. Be sure to say that you are calling about CDC protocol #4121. Someone will return your call as soon as possible.