The COPD Research Registry is a confidential database of individuals diagnosed with COPD or at risk of developing COPD. The Registry was established in 2007 by the COPD Foundation to help researchers learn more about COPD and to help people interested in COPD research find opportunities to participate. The Registry operates under the direction of the COPD Foundation’s Board of Directors and is guided by an Oversight Committee comprised of leaders in the medical, ethical, scientific and COPD communities. The COPD Foundation is working with National Jewish Health in Denver, Colorado to serve as the Registry Coordinating Center and to ensure strictest confidentiality of participant information.

Who is eligible to enroll?

Individuals over the age of 18 who have been diagnosed with COPD or are at risk of developing COPD may enroll in theCOPD Research Registry. To participate, individuals are asked to complete a survey and consent document which provides the COPD Research Registry with permission to include the participant in the Registry and to contact the participant with information about COPD research studies.

(NIH.gov)

How confidential is the database?

Your completed survey and consent will go directly to the Registry Coordinating Center at National Jewish Health (NJH) in Denver, Colorado. NJH strictly adheres to established confidentiality procedures that are intended to protect the identity of research participants. The Registry will not disclose personal information to researchers or any organizations. All participant records, whether electronic or paper, are protected at all times.

How can I help promote research?

While it is estimated that 600 million individuals worldwide have COPD, there is no resource to help COPD researchers and people interested in participating in COPD research find one another. By joining the COPD Research Registry, you will enable the Registry to serve as a clinical research resource for COPD researchers and people who want to participate in COPD research. The information collected in the survey and consent will help researchers learn more about the symptoms of COPD from people who have the disease or are at risk of developing the disease. The completed survey and consent will also help Registry participants contact COPD researchers about study participation.

Are the COPD Research Registry and the Bronchiectasis Research Registry the same thing?

No. The COPD Research Registry is a participant-enlisted database with medical and contact information of individuals willing to be contacted about clinical research studies that pertain to COPD.

The Bronchiectasis Research Consortium Registry (BRCR) contains medical and scientific data that is useful to physicians who are researching bronchiectasis only. You can read more about the Bronchiectasis Registry by visiting the Research section of our website. Continue checking the Bronchiectasis Registry section to find out more about how you can sign up for the BRCR when enrollment opens.

May I join both the COPD and Bronchiectasis research registries?

Each Registry has specific criteria for enrollment. Individuals who meet all criteria for both Registries are welcome to enroll in both Registries.

How do I join the COPD Research Registry?

Enrollment requires completion and submission of the survey and consent document. If you have any question please call our C.O.P.D. Information Line at: 1-866-316-COPD (2673). You can complete the form online by clicking here. You can also print out a copy of the form and mail it to:

The COPD Foundation Survey
c/o National Jewish Health
1400 Jackson St., K012-Z
Denver, CO 80206

What happens after I enroll?

Once you are enrolled, the COPD Foundation Research Registry will maintain your information in a confidential database. Researchers interested in receiving information from the database must apply to the Oversight Committee and provide documentation that their research design has been reviewed and approved by an Institutional Review Board. In the event that a researcher receives approval to use the database, no contact information for Registry participants will be disclosed.

The COPD Research Registry will send invitations for research studies to Registry participants on behalf of researchers who have undergone the application process and have received approval to use the database. Registry participants may then review the invitations and decide if the research study is of interest. Registry participants who want to participate in a study may then contact the researcher to discuss participation in greater detail.

To fill out the form online, click here.

To download a copy and mail, click here.

More information about the COPDGene Study can be found here.