Dr. Edwin Silverman talks about COPDGene and importance of clinical research participation

Uploaded by NHLBI on 13.02.2012


COPD stands for "chronic obstructive pulmonary disease."
It's a syndrome that includes emphysema,
where the lung is destroyed and replaced by holes.
It includes chronic bronchitis,
where people have chronic cough and sputum production.
And it includes small airway disease,
where the small bronchial tubes get narrowed and damaged.
So different COPD patients
have different combinations of those three things,
but they cause airflow obstruction.
It makes it hard for them to blow the air out hard and fast,
which makes them short of breath
and leads to a variety of other health problems.
And it's a major cause of death.
It's the third-leading cause of death in the U.S.
Major cause of loss of time from work,
of disability, and other healthcare costs.
COPDGene is a study of more than 10,000 volunteers
who are getting careful genetic assessment
using state-of-the-art methods,
state-of-the-art imaging with CAT scans,
and then a variety of other clinical tests,
like questionnaires and breathing tests
so that we can try to understand
why some people get COPD and others don't.
I think this is really the largest sample of COPD subjects
that have ever been well-characterized,
certainly for a genetic study, ever assembled,
and that this really has been built
as a national and international resource,
with all the data being deposited into NIH repositories
so that people can get access to it.
Volunteers were incredibly helpful.
I mean, this research would not have been possible
without the incredible support from the general population.
And 10,000 people to be recruited over a 3-year period
was a huge effort.
Two-thirds of the people were Non-Hispanic White,
and one-third were African-American.
We had a close partnership with the COPD Foundation.
It's a patient-run organization
that really helped us launch the COPDGene Study.
It provided support to help us get recruitment for the study,
and, really, every step of the way
has been a critical ally for our work.
So, I think that there's just no way
of overemphasizing the importance of volunteerism
for this work.
If we hadn't had enthusiastic support from our volunteers,
who gave their own time to come in, get a CAT scan,
go through an extensive array of tests,
with breathing tests and walk tests
and a long list of questionnaires --
If they hadn't been willing to do that,
we just couldn't do the work.
So I think that people need to understand
that medical research isn't something
that happens out there by other people.
If they want new medical discoveries,
they should really consider getting involved.
They should consider being part of clinical trials,
consider being part of these observational
epidemiologic and genetic studies,
because that's the only way we'll really learn things
and will advance medical knowledge.