All information in the database is strictly confidential. No researchers or any other third party personnel will have access to your identifying or contact information, (name, address, phone number, etc.), unless you provide it to them directly by deciding to join their research project.

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 group that approves research methods that are safe and humane). A committee reviews the application and approves or declines the researchers’ request to use the Registry. The type of information requested will then determine the next step.
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 will be collected from the entrance questionnaires. Of course, they will not be given your identifying or contact information.

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 research project. The COPD Foundation Registry will then send out invitation letters explaining the basics of the project, along with contact information for the researcher(s). If you find a project of interest, 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 personally evaluate and decide if you wish to be a part of that particular research project, or to decline. All this is done by the COPD Foundation with the strictest control over confidentiality.

Preliminary Information on the First Major Survey and Study

Dr. James Crapo at the National Jewish Medical and Research Center in Denver, Colorado and Dr. Ed Silverman at the Brigham and Women's Hospital in Boston, Massachusetts are leading a team of investigators who propose the creation of a cohort (study group) of over 10,000 who have been diagnosed with COPD or who are at risk. This large survey will be critical in finding keys to unlocking future studies. The potential applications of this national database are to improve our understanding of and care for COPD patients is extraordinary.

As Dr. Crapo said: "We don't understand the characteristics of the subtypes of COPD yet, -- We don't know why certain cases progress more than others. If we could understand the different forms of COPD, we could better do prevention and treatment."
The goal of the study will be to conduct a whole genome analysis to identify the primary genes that determine such factors as: 

• Why are some people at risk for developing COPD.
• Why do some smokers (less that 1 out of very 5) develop COPD, while others do not.
• Why do certain COPD patients’ conditions progress more than others.

In addition to the genetic studies, the proposed program will be carefully monitoring all members to determine other characteristics and protocols that affect the progression of the disease as well as determining the effectiveness of different therapies in patients with different types of COPD.
There will also be a control group consisting of smokers who have not developed COPD even though they smoked as much as subjects that do have COPD. This control group is essential in order to understand the genetic factors that make one person more susceptible to COPD than another.

The planned study will take place at 13 major medical centers across the United States. In addition to clinical evaluation, and CT scans, each subject will be giving a small quantity of blood (6 cc) for genetic analysis by genetic epidemiologists at Harvard Medical School, Johns Hopkins Medical Center or the University of Colorado Health Sciences Center.

This research project will be the first to bring together a group of subjects with lung disease using this type of genetic analysis. It is at the frontier of genetic epidemiology and will place COPD at the cutting edge of human research.

Most important is the fact that it will be the leading the way to finding the keys to better knowledge and understanding of this disease. With that will come better treatment options, and hopefully even one day a cure. The COPD Foundation and the National Jewish Medical and Research Center have partnered to provide the way for this registry and study.

Now we need you to join in the effort!

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