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 has started a research registry.

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 information.

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 researchers’ 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 entrance questionnaires.

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.

The registry is at: http://www.COPDFoundation.org/registry

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