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Questions

 

1. My neighbor or family member is in your program, and I'd like to participate.
  • Thank you so much for your interest in volunteering for the study but we are only able to work with those persons whose names appear on our randomly selected mailing list.
2. I received a call and a letter but I'd still like more information about your project.
  • Thank you for your interest in our REGARDS project. REGARDS is sponsored by the National Institute of Neurological Disorders and Stroke, which is a part of the larger National Institutes of Health (NIH). The grant title is: Etiology of Geographic and Racial Differences in Stroke. Principal Investigator: George Howard. You may also refer to the CRISP (Computer Retrieval of Information on Scientific Projects) website for an abstract display of REGARDS. Search for Principal Investigator: George Howard. You can also go to the Publications Section of this web site to see a listing and abstracts that can provide more information. Finally, you can always call the REGARDS project toll free at 1-888- REGARD-8 (1-888-734-2738).
3. How did you get my name?
  • Your name was selected randomly by a computer from a listing of names of people aged 45 and older. This list was purchased from a list vendor who provides this sort of information. Because this is a research project all of the information you share with us will be kept completely confidential. When the results of this study are published, individuals will not be identified by name and all data will be published in statistical form.
4. The letter is addressed to "The Smith Family." Can two of us participate?
  • Thank you for your interest. Due to the way the project is set up, only one participant per household is able to participate. This is to include different people from all over the country and make sure we don't have too many from one part of the country.
5. Why do you need information about my weight?
  • This information along with other factors will be used for statistical purposes to better understand how risk factors work together to explain stroke risk.
6. Why do you need information about my income?
  • We only need the range that your household income falls in. We do not need to know the actual income. Along with other factors, this information will be used only for statistical purposes to better understand how risk factors work together to explain stroke risk. No one except the researchers will have access to this information.
7. What kinds of blood tests will be done?
  • The blood tests will measure your blood sugar, cholesterol and kidney function. The stored sample may be used to measure other substances that might relate to stroke. Those blood tests are considered research tests.
8. I'm not very comfortable with the idea of someone coming to my home.
  • The REGARDS project has contracted with a national health care examination company that performs similar tests for many insurance companies and other organizations. The person who visits your home will have gone through a rigorous background check before being employed by this company and being allowed to make home visits. The person will show you identification when he/she comes to your door.
9. Can the exam be scheduled at my office or a location other than my home?

We are happy to schedule your exam at a location that is more convenient for you. A representative from the health care examination company (Examination Management Services, Inc. (EMSI)) will contact you to schedule your exam time, date, and location. Just let the representative know that you would like the exam at another location.

10. It seems like it's going to take a lot of time.
  • Actually, the time you will spend on this study is very short. After you complete the telephone interview, you will have the in-home visit that usually takes about 45 minutes. Then you fill out several written questionnaires and mail them back to us. After that, we call you twice a year to see how you've been doing and to ask a few questions about your health.
11. How can this be confidential if you have my name and phone number?
  • We are required by law to protect all the information we have. In addition, because this is a research project, all of the information you share with us will be kept completely confidential. The researchers, when they publish results, will only report statistical numbers, and no names or other identifying information will be reported.
12. Why do you need my medical records?
  • We may request copies of your medical records if you have a stroke or stroke-like symptoms and visit a doctor, or you had a stay at the hospital for another reason. Sometimes things happen during a hospitalization for a heart attack that provides important information about stroke risk factors. These records will be reviewed by trained medical professionals. By studying these records, the scientists and doctors involved in this study hope to understand why some people develop stroke and others do not.
13. When and where are REGARDS results going to be published?
  • The information that the scientists gather from this study will be published in scientific journals that relate to stroke and general health issues. Some results are already being published and have been reported very briefly in the newsletters. You will continue to receive information about these publications in the REGARDS newsletters that we send to you twice a year. You can go to the Publications Section of this web site to see a listing of publications so far with links to summaries of the results.
14. I'm not 45, does that make me ineligible?
  • Yes. If you are under the age of 45, please call the REGARDS Operations Center 1-888-REGARD-8 (1-888-734-2738) and we will tell our call center to remove your name from their calling list.
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CANCELLATIONS:

1. I received your letter but I do not wish to participate.
  • Please call the REGARDS project toll free at 1-888-REGARD-8 (1-888-734-2738). We will promptly remove your name from the list, but if you should change your mind, please don't hesitate to call or email us.
2. I've gone through the interview but do not wish to schedule a visit, I no longer want to participate.
  • Please call the REGARDS project toll free at 1-888-REGARD-8 (1-888-734-2738), and we will certainly honor your request.
3. I've already had the exam but I don't want to continue with the study. I've already sent in the paperwork though.
  • Please call the REGARDS project toll free at 1-888-REGARD-8 (1-888-734-2738).

CHECKS:

1. I've done everything I was supposed to do, but I have not received my check.
  • Thank you for your participation in the study and I'm sorry you haven't received your check yet. Please call the REGARDS project toll free at 1-888-REGARD-8 (1-888-734-2738).

LAB RESULTS:

1. Where is my result letter?
  • Please call the REGARDS project toll free at 1-888-REGARD-8 (1-888-734-2738).
2. My results can't be right! She wasn't able to draw any blood.
  • Please call the REGARDS project toll free at 1-888-REGARD-8 (1-888-734-2738).
3. I received a call that my results were out of sorts, can you tell me what's going on?
  • The call was made from one of our managers who handles what is termed our "Alert" cases. Please call the REGARDS project toll free at 1-888-REGARD-8 (1-888-734-2738).
4. I got my lab results but I don't understand what this means. Can you break it down for me?
  • Please call the REGARDS project toll free at 1-888-REGARD-8 (1-888-734-2738).
5. I'd like to have a copy of my results sent to my physician. He wants to see my ECG strip itself.
  • I'm sorry the actual EKG strip itself is unavailable, we will, however be glad to send them a copy of the EKG result report. Please call the REGARDS project toll free at 1-888-REGARD-8 (1-888-734-2738).
6. I'd like to have a copy of my DNA results.
  • We do not provide DNA results to our participants; we only store DNA for future studies. On the consent form, you had the option to give us permission to look at your DNA and notify you if we find something that may be important to your health. At the current moment, the medical community does not have a test that can look at your DNA and tell whether or not you are at a high risk for stroke. We are hoping that in the near future, there will be a way to look at your DNA and tell your personal risk for stroke. For this reason, we are collecting your blood, and your DNA, in hopes that we will be able to give you valuable information about your health in the near future. Right now, there are no such tests available.

Questionnaires:

1. I don't understand what you want, can you help me with this?
  • Please call the REGARDS project toll free at 1-888-REGARD-8 (1-888-734-2738).
2. I sent in my forms, but I want to change my answers, can I do that?
  • Please call the REGARDS project toll free at 1-888-REGARD-8 (1-888-734-2738).
3. I have more brothers and sisters than you've given me space, what do I do about that?
  • Please call the REGARDS project toll free at 1-888-REGARD-8 (1-888-734-2738).
4. I've messed up these forms, can you send me more?

Sure, we'll send them immediately. Please call the REGARDS project toll free at 1-888-REGARD-8 (1-888-734-2738).

INFORMATION CHANGES:

1. I need to report an address and phone number change. How can I do that?
2. I’m going to be out of town for a few months. I have a temporary address and phone number but I want to keep my old one in your records.
3. My name has changed.
  • If any of these situations occur, please call the REGARDS project toll free at 1-888-REGARD-8 (1-888-734-2738) and we will update the records. Thank you for helping us be able to stay in contact with you.