ClinSeq: A Large-Scale Medical Sequencing Clinical Research Pilot Study
 Family History Tool
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Frequently Asked Questions About the ClinSeq Study
What is the ClinSeq study about?
The main goal of ClinSeq is to learn how to do genome sequencing in a clinical research
setting. Genome sequencing is a research test that allows us to analyze many genes from
a person. By doing this test, we may find changes in a gene that cause or contribute to
disease. So people who decide to participate in this study may learn about changes in a
gene that have already caused them to have signs and symptoms of a disease. They may
also learn about changes in a gene that may cause them to have signs and symptoms of a
disease in the future. For example, we may find a change in a gene that predisposes a
person to have high cholesterol.
In the beginning of the study, we will focus on heart disease. So we will be analyzing
some genes that we know are involved in heart disease, and some genes that we think are
involved in heart disease. Later in the study, we hope to expand our focus to other
conditions and genes. It is important for you to know that we are looking for participants who are willing to interact with us over a period of years.
Can I participate?
If you are between 45 and 65 years old ...
AND have NOT smoked regularly in the past year ...
AND have a primary care physician ...
...You may be eligible to participate in the study.
What is involved in the study?
Participation in ClinSeq will involve an initial visit to the National Institutes of Health in
Bethesda, Maryland. During this visit, you will learn more about the study and sign a
consent form if you decide to participate. You will undergo a series of tests and
evaluations, including blood tests, urine tests, blood pressure measurements, an
echocardiogram, and an EKG. During this visit or at a later visit, you may also be asked to undergo a CAT scan of your coronary arteries. After these visits, you will receive a letter
summarizing the results of all these tests.
Then, over the course of the coming years, we may ask you to return for follow-up visits
for different reasons. For example, if we find a change in a gene that we think may cause or contribute to a disease, we will ask you to return in case you want to learn about that change and what it means for your health. Another example is if we decide to do other clinical tests to understand gene changes we find in a group of participants.
What are the possible benefits of joining the study?
Possible benefits include:
- Free clinical testing, such as testing for cholesterol and diabetes
- Free CAT scan to detect coronary artery disease
- Finding gene change(s) that are important to your health and/or the health of your relatives.
What are the possible risks of joining the study?
Possible risks include:
- Physical risks, such as pain or bruising as a result of the blood draw and radiation exposure during the CAT scan. These risks tend to be very rare or minor.
- Emotional and psychological risks, such as some people become upset when they learn that they have a gene change that causes a disease.
What is the cost of the study?
The visits and all tests are free of charge. There is no cost to you or your health insurance
company for this study.
Will I get paid for joining the study?
No, you will not be paid for participating in the study.
How can I learn more about the study?
You can learn more about the study by reading the information on the following Web site: ClinSeq: A Large-Scale Medical Sequencing Clinical Research Pilot Study.
You may also call the ClinSeq research study assistant at (301) 443-6160 to
ask questions about it.
How do I enroll?
You can call the ClinSeq research study assistant at (301) 443-6160. She or he will make sure you are eligible, give you more information about the initial visit and help you get
your initial visit scheduled for a day that is convenient for you.
Last Updated: February 4, 2009
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