Research Update
Research is important to understanding the dynamics of COPD, how to manage it, and ultimately find a cure. And the active participation of individuals with COPD in clinical research is key to advancing research and developing new therapies in order to improve the quality of life of individuals affected by COPD.
For more information about the programs listed below, call the C.O.P.D. Information Line at 1-866-316-COPD (2673) to speak with a volunteer COPD patient associate.
- COPD Research Registry: The COPD Foundation created the COPD Research Registry in order to create a confidential database of individuals with COPD. Individuals in the database volunteered to have their information stored in order to be part of clinical research for COPD. The Registry is collecting names of individuals with COPD for research studies such as the COPDGene Study. COPDGene Study was recently awarded $37 million from the National Institutes of Health (NIH) to analyze the entire human genome to find genetic predispositions for COPD (other than Alpha-1 Antitrypsin Deficiency, which we already know contributes to developing COPD). The COPD Registry is a confidential—meaning that no researchers can obtain personal information of the individuals enrolled without the individual’s consent. To read more about the COPDGene Study, click here.
- Bronchiectasis Research Registry: Both the COPD Foundation and the Richard H. Scarborough Bronchiectasis Research Fund developed the Bronchiectasis Research Registry (BRR). BRR is a registry separate from the COPD Research Registry, dedicated to enroll individuals with bronchiectasis who are willing to participate in clinical research for the disease. Created in November of 2007, the confidential database is housed at the University of North Carolina to ensure strictest privacy of all individuals enrolled in the registry. Approximately 10 institutions are part of the Bronchiectasis Research Consortium, guiding the process to developing a solid and confidential database in order to make it easier for researchers to advance in their studies on bronchiectasis.
- PCP Needs Assessment: In 2007, the COPD Foundation in conjunction with Outcomes, Inc. conducted a survey to find the educational needs in primary care physicians when they manage COPD in their patients. The results showed that only 25% of doctors used the medical guidelines to help make their decisions regarding managing COPD in their patients. The survey found that one of the biggest obstacles to optimal COPD management in primary care is the challenge of primary care physicians recognizing patients with early COPD. To read the published article, click here.
- Co-morbidities Survey: One of the first surveys the Foundation conducted was the Co-morbidities Survey. The results showed that most of the patients received less than optimal medical therapy, and that co-morbidities (other diseases and symptoms that exist alongside COPD) are very common and add on to the complexity and cost of managing COPD. But also showed that individuals who were connected to COPD advocacy and support groups were better informed about COPD guidelines, therefore receiving care that was closer to the guidelines.