Att 9b_Adult Consent Brochure

Attachment 9b

National Health and Nutrition Examination Survey

Overview
The National Health and Nutrition
Examination Survey (NHANES) is a
survey conducted by the National
Center for Health Statistics, part of
the Centers for Disease Control and
Prevention. We designed the survey
to learn about the health and diet of
people in the United States.
Our survey is unique. It combines
a home interview with health
measurements, which we do in special mobile exam centers. These
centers travel across the country, each with its own highly trained
medical team. The team looks at special health topics. We use the most
up-to-date methods and equipment for medical and dental exams and
other lab tests.
Why is this health survey important?
We use the data gathered in this survey
to find out the number of people with
certain health problems—for example,
diabetes and high blood pressure. We
look at diet and other habits that affect
health, such as smoking and exercise.
NHANES data tells us the health and
nutrition of people of all ages. It also
helps design health programs and
services, and expands our knowledge
about the health of people in the
United States.
What do I gain by taking part in the exam?
• Free health test results.
• The chance to help learn more about the health of the Nation.
• A token of thanks for your time and effort.
You may choose to be in the survey and you may allow your child to
be in it, too. That is your choice. There is no penalty if you refuse. You
may refuse any part of the exam and you are free to drop out at any
time. Also, during the interviews you may choose not to answer every
question.

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What will I be asked to do at the mobile center?

Upon arriving at the mobile center, you will be asked to
change into a two-piece examination outfit.
Our medical team will then guide you to private rooms
where we will check your:
Height and weight

Blood pressure

Hearing

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National Health and Nutrition Examination Survey

Teeth

We will collect blood and
urine samples

Bone density

And ask you questions about
what you eat

If your appointment is scheduled in the morning, we will ask you not
to eat or drink anything overnight. The health tests may take up to 4
hours. The time spent in the mobile center and the tests you receive will
be based on your age and current medical condition. (For a full list of
exams you may receive, see the Health Measurements List.)
Are the tests safe?
The tests are safe. Some tests may cause you slight discomfort.
Examples are having a blood sample taken or not eating for 9 hours.
For the blood sample, a person will have a small amount of blood
drawn from a vein in his or her arm with a needle. We will not ask you
to have any test that is wrong for you because of a health problem you
have.
We will give a bone density test involving low-dosage x-rays to
persons aged 8 and older. Radiation exposure during this test is equal
to a cross-country airline flight or a few days of natural background
radiation. But because the bone density scan involves x-rays, no one
who is pregnant should have this exam. We will get information about
periods from girls and women, and those who have started their
periods will have a urine pregnancy test. Those with a positive test will
not have the bone density scan.

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Medical errors and injuries are very rare. The NHANES program
cannot provide money or other compensation if they occur. However,
if you believe you have been harmed as a result of your participation
in NHANES, we want to know about it. Please call us at 1–800–
452–6115. You also have a right to file a claim under the Federal Tort
Claims Act with the Centers for Disease Control and Prevention. We
can provide you with information about how to do so. You must file the
claim within two years after the date you became aware of the personal
injury, loss of property, or other damage.
Will you ask personal questions?
At the mobile center you will be asked some
personal questions. A trained interviewer will
ask some of these questions. Other questions,
like those about sexual behaviors and drug
use, will be asked in complete privacy. The
interviewer will leave the room. The questions
will be on a computer screen. You answer by
touching an answer on the screen.
Like all of the other data we collect, the answers you give us are kept
strictly private. If you are under 18 years of age, we may notify your
parents if we have reason to believe you may harm yourself because of
sad feelings.
Will I get my results?
Yes, you will get a report of your results. If the exam shows urgent
health problems, we will notify you at once
and refer you for treatment. If an urgent
problem is found through your lab tests, we
will immediately send that information in
a letter to your home address. If you wish,
we will mail the routine results to you about
3–4 months after the exam. In general, we
give results only to the person examined
or to the parents or guardians of children.
Some results, like those for sexually transmitted disease (STD) tests and
pregnancy tests, are not put in writing. We report positive pregnancy
test results only to the person tested if she is 14 years or older and
doesn’t already know she is pregnant. If a girl is younger than 14 and
has a positive pregnancy test, we will inform both her and her parent
or guardian. How we report STD test results is explained in the next
section.
Some tests are not reported because they will be used only for research
and are not used for medical care. Better ways to look at some of the
tests may be developed in the future. Some of the tests may be read
again. We will not report the results of future tests to you.

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National Health and Nutrition Examination Survey

NHANES does not cover the cost of any health care you may decide
to get after the exam. If you have questions about getting your results,
please call 1–800–452–6115.
Will you test for sexually transmitted diseases (STDs)?
Teenagers (14 years and older) and adults under 60 years will have
tests for STDs. We will not put these results in writing, but you can get
STD test results a few weeks after the exam.
Before you leave the mobile center, you will be given a toll-free number,
a password, and the dates to call for your results. Only you will get
your test results by calling in and telling us your password. Parents will
not be told their child’s STD test results. If your test results show that you
have a current health problem, we will talk with you about the results
and tell you how to get treatment. We will keep all STD test results
completely private, just like all other test results. If you do not want to be
tested, you can tell a staff member. For details on the tests, please see
the Health Measurements List.
Will my information be kept private?
Public laws keep all information you give private. We take your
privacy very seriously. All information that relates to or describes
identifiable characteristics of individuals, a practice,
or an establishment will be used only for statistical purposes. NCHS
staff, contractors and agents will not disclose or release responses in
identifiable form without the consent of the individual or establishment
in accordance with section 308(d) of the Public Health Service Act (42
USC 242m) and the Confidential Information Protection and Statistical
Efficiency Act of 2002 (CIPSEA, Title 5 of Public Law 107-347). In
accordance with CIPSEA every NCHS employee, contractor and agent
have taken an oath and is subject to a jail term of up to five years, a
fine of up to $250,000, or both if he or she willfully discloses ANY
identifiable information about you. In addition, NCHS complies with
the Cybersecurity Enhancement Act of 2015. This law requires the
Federal government to protect its information by using computer security
programs to identify cybersecurity risks against federal computer
networks.
These laws do not allow us to give out data that identifies you or your
family without your permission. However, if we find signs of child
abuse during an exam, we will report it to the local department of
social services or the police.
We will keep all survey data safe and secure. When we share data
with our partners, we do so in a way that protects your privacy as
required and guaranteed by law. Our interviewer can provide a list of
our partners if you wish to learn more.

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How are NHANES data used?
What you tell us, your exam results, and samples you give are a good
resource for health science. Many federal agencies, universities, and
other public and private groups use NHANES data. They use it to help
find new cures and treatments for diseases and disabilities. The aim is
to make the health of all people better. Results of this survey may be
reported in journals, at major scientific meetings, or through other news
media. None of these reports will ever name or use data that can point
to any person who took part in the survey.
NHANES has been used in important national reports. One of these
highlights the food we eat. Another tells us about the exposures we
have to chemicals in the environment. The survey has also been used
to track the number of people who are overweight or obese. Research
using NHANES can be found on our website, listed on the back of this
brochure.
Health research using NHANES can be enhanced by combining your
survey records with other data sources. An example is linking your
survey results with vital statistics and Medicare claims. To do this, we
will ask your permission to collect your Social Security and Medicare
numbers. As we told you before, we keep this information safe and
secure.
Also, we may need to contact you in the future. To do this we will
ask public or private agencies, such as the Post Office, to update us
with changes to your address. In the past, we have had the chance
to call or revisit people who took part in this survey. We may contact
you in the future to ask you to be part of other research projects. Your
participation in future studies is voluntary.

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National Health and Nutrition Examination Survey

More questions?
Our survey representative can discuss other
questions or concerns you might have or give
you printed material that can help you. She
or he can give you a phone number in your
area that you can call for more facts about
the survey.
Also, you can make a free call to our Senior
Medical Officer, Dr. Duong Nguyen of the
U.S. Public Health Service, to discuss any
aspect of the survey.
He can be reached at 1–800–452–6115, Monday–Friday, 7:30
a.m.–4:30 p.m. EST. You may also contact him regarding any harm
to you resulting from this survey. You can also get answers to your
questions by mail by writing to him at MS P08, 3311 Toledo Rd.,
Hyattsville, MD 20782.
You may have questions about your rights as a participant in this
research study. If so, please call the Research Ethics Review Board at
the National Center for Health Statistics, toll-free, at 1–800–223–8118.
Please leave a brief message with your name and phone number. Say
that you are calling about Protocol # 2011–17. Your call will be returned
as soon as possible.

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