The COPD Registry
COPD research is needed to
find new therapies and possibly even a cure for COPD. Without the
participation of patients, effective research studies cannot take place.
In order to move COPD research forward and help patients identify and
evaluate research opportunities, the COPD Foundation started the
The functioning of the registry:
The research registry is a confidential database of individuals
diagnosed with Chronic Obstructive Pulmonary Disease (COPD), as well as
immediate family members who would consider participating in research.
The COPD Foundation has developed the registry in conjunction with the
National Jewish Medical & Research Center in Denver, Colorado. The
National Jewish Medical & Research Center will host the location of the
registry in order to ensure the strictest confidentiality of patient
All information in the database is strictly confidential. No researchers
or any other third party personnel will have access to identifying or
contact information, (name, address, phone number, etc.), unless it is
provided to them directly by the individual.
Before researchers can obtain information from the database for a
project, they must first obtain permission. The researchers must show a
certificate of approval from an internal review board. A COPD Foundation
committee reviews the application and approves or declines the
researchersí request to use the Registry.
Depending on the type of information needed:
If all that is needed is basic information about patients, and there is
no need for personal participation in the study, then the basic
information with no identifying information will be collected from the
If the studies require personal participation by patients (example:
additional questionnaires, physical evaluations, etc.), the COPD
Foundation Registry will search the database for participants who
closely match the criteria needed for the particular project, then send
out invitation letters explaining the project. If the project is of
interest to you, you will contact the researcher(s) directly so you can
ask more questions and decide if you would like to participate. This
allows you to make a personal evaluation, and to decide if you wish to
be a part of that particular project, or to decline. All this is done by
the COPD Foundation with the strictest control over confidentiality.
Why is a registry essential?
A large, fully organized and current registry of possible study
participants substantially reduces both the time and expense. This
effectively makes the studies more cost effective, as well as shortening
the lead time to start by minimizing the recruiting times.
A COPD Registry signals everyone, from researchers to governments that
COPD patients are interested in partnering in research to improve
treatments and possible cures for COPD. No longer will there be the
inference that COPDers are content to not participate. Quite the
contrary, COPDers will become a voice to be listened to.
In closing: This registry may or may not help you and I immediately.
Many will benefit from the greater knowledge gained. Many may benefit
from medicines and/or protocols that make our quality of life better.
But think ahead too - to all the future generations still to come.
Remember that COPD is now the ONLY disease that is increasing in
numbers. We have the opportunity to start reversing that NOW. Even if we
choose to not participate directly in future studies, the data that each
of us can now input into the registry has immense value. We owe that not
only to ourselves, but to all our families that follow in our footsteps.
Here is the opportunity for all to step up and contribute.