Frequently Asked Questions

What is COPD?

COPD, or chronic obstructive pulmonary (PULL-mun-ary) disease, is a progressive disease that makes it hard to breathe. "Progressive" means the disease gets worse over time. COPD can cause coughing that produces large amounts of mucus (a slimy substance), wheezing, shortness of breath, chest tightness, and other symptoms.

Cigarette smoking is the leading cause of COPD. Most people who have COPD smoke or used to smoke. Long-term exposure to other lung irritants, such as air pollution, chemical fumes, or dust, also may contribute to COPD. In COPD, less air flows in and out of the airways because of one or more of the following:

• The airways and air sacs lose their elastic quality.
• The walls between many of the air sacs are destroyed.
• The walls of the airways become thick and inflamed (swollen).
• The airways make more mucus than usual, which tends to clog the airways.

Who is at risk for developing COPD?

COPD most often occurs in people 40 years of age and older who have a history of smoking. These can be individuals who are either current or former smokers. Although as many as 1 out of 6 individuals with COPD have never smoked, smoking does remain the most common cause of COPD and accounts for as many as 9 out of 10 COPD-related deaths.

What does genetic epidemiology mean?

Genetic epidemiology is the study of the role that genetic factors play in determining health and disease in families and in populations, and the interplay of such genetic factors with environmental factors. Epidemiology in general is the study of factors affecting the health and illness of populations. It is considered a cornerstone methodology of public health research, and is highly regarded in evidence-based medicine for identifying risk factors for disease and determining optimal treatment approaches to clinical practice.

What do genes have to do with COPD?

Some people can smoke their whole lives and never develop COPD where others may only have a mild smoking history or history of exposure to other lung irritants and develop COPD. We believe the differences between people who develop COPD and those that don’t lie in a person’s individual genetic make up. By understanding what genes may be associated with the increased risk of developing COPD, we hope to develop treatments and therapies that will improve the lives of those suffering with COPD.

If an individual has never smoked or exposed their lungs to pollutants, they can still develop COPD. Alpha-1 Antitrypsin (AAT) deficiency is a proven but relatively rare genetic risk factor for emphysema. Alpha-1-related COPD is caused by a deficiency of the AAT protein in the bloodstream. Without the AAT protein in the bloodstream, white blood cells begin to harm the lungs and lung deterioration occurs. Because only a small fraction of people with COPD have ATT deficiency, and because COPD clusters in families, it is believed that there are other genetic predispositions to develope COPD. The COPDGene® Study aims to find out what other genetic factor are involved in the development of COPD.

How do I participate?

To participate in the COPDGene® Study you must be between the ages of 45 and 80, be either a non-smoker or have a significant history of cigarette smoking, and be able to travel to one of the study sites (to see a map of the participating study sites, click the ‘study sites’ tab on the COPDGene® home page). If you meet these initial criteria, please go to the ‘Participate in this study’ tab on the COPDGene® home page. You can then see a list of participating study sites in your area. When you call to make an appointment, you will be able to speak with one of our research coordinators who will determine if you meet the eligibility requirements for the study.

What will be required of me?

If you meet all the eligibility requirements, you will be asked to come in person to one of the study sites and complete a study visit. At the study visit you will be required to complete several questionnaires, complete a walking test, a breathing test, receive a chest CT scan, and have some blood drawn. After the initial visit, you will be asked to continue your participation in the study by completing a brief, seven question survey up to four times a year for the length of the study. Participation is easy and requires a minimal time commitment.

Will my personal information be kept confidential?

Any personal information that you give us about your health and medical condition by participating in the study will be kept strictly confidential and is legally protected from any parties outside of COPDGene®. Your name and other contact information will remain at the local clinical center where you participate. Study test results from COPDGene® will be made available to other investigators, but your personal contact information will remain confidential.

Will I be compensated for my time?

You will receive monetary compensation for your participation in COPDGene® Study. The amount of money that you receive will be contingent on what study group you are eligible for and will be determined during your eligibility assessment by a clinical research coordinator.

How can I find out if there is a study site near my home?

To find out of there is a study site near your home, please click the ‘locations’ tab located in the top left side on the main COPDGene® web page.

Can I participate from my home?

In order to participate in the study, you must be able to visit one of the study site locations.

Can I ask other people I know if they want to participate?

Yes! We encourage you to tell your friends about the COPDGene® Study.