COPD Research Registry

Research

COPD Research Registry

The COPD Research Registry is a confidential database of individuals diagnosed with COPD or at risk of developing COPD.

The COPD Research Registry is a confidential database of individuals diagnosed with COPD or at risk of developing COPD. Participants complete a survey about their COPD, or risk thereof, and are given the option to be contacted in the event they may qualify for a research study.

Established in 2007 to facilitate COPD research, the Registry operates under the direction of the COPD Foundation’s Board of Directors, and is guided by the Research Registry Advisory Committee. The National Jewish Health in Denver, Colorado serves as the Registry’s Data Coordinating Center (DCC).

The DCC ensures strictest confidentiality of participant information. Click the following links to learn more about the Registry.

Who is eligible to enroll?plus

Individuals over the age of 18 who have been diagnosed with COPD or are at risk of developing COPD may enroll in the COPD Research Registry.

How can I enroll?plus

Enrollment in the Registry requires completion and submission of the Informed Consent Form and Registry Questionnaire document. You can complete and submit the document online by clicking here. You can also print out a copy of the document by clicking here, complete it, and mail it to the following address:

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

Researchers interested in receiving information from the database must apply to the Research Registry Advisory 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. 
If you are a researcher interested in using the COPD Research Registry for research purposes, please contact Delia Prieto at 1-866-731-2673 ext. 272 or email her at dprieto@copdfoundation.org for more information.

How confidential is this database?plus

The completed Informed Consent Form and Registry Questionnaire document will go directly to the DCC at National Jewish Health (NJH). NJH strictly adheres to established confidentiality procedures that are intended to protect the identity of research participants. All participant records, whether electronic or paper, are protected at all times.

How can I help promote research?plus

An estimated that 210 million individuals worldwide have COPD, but there is no resource to connect COPD researchers and people interested in participating in COPD research. By joining the COPD Research Registry, you will enable the Registry to serve as a clinical research resource for researchers and people who want to participate in COPD research.

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

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 Registry contains medical data that is useful to physicians who are interested in Bronchiectasis or Nontuberculosis Mycobacteria (NTM) research. You can read more about the Bronchiectasis Research Registry by clicking here.

Can I Join Both The COPD Research Registry And The Bronchiectasis Research Registry?plus

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

What Happens After I Enroll?plus

Once you are enrolled, the COPD Foundation will maintain your information in the Registry’s confidential database. You may be invited to participate in COPD research studies in the future.

The COPD Foundation would like to thank the following organizations for their generous support of the COPD Research Registry: CSL Behring, Novartis and Sepracor.

The COPD Foundation also extends its sincerest thanks to the National Jewish Health in Denver, Colorado for their support and partnership in the COPD Research Registry.

The COPD Foundation would like to thank the following organizations for their generous support of the COPD Research Registry: CSL Behring, Novartis and Sepracor.

The COPD Foundation also extends its sincerest thanks to the National Jewish Health in Denver, Colorado for their support and partnership in the COPD Research Registry.

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