Chronic Obstructive Pulmonary Disease (COPD) is a critical part of US health care, affecting 12–24 million individuals. It is responsible for 800,000 hospitalizations per year and recently became America’s third leading cause of death. COPD-related health expenditures are estimated to be as high as $50 billion per year, driven primarily by costs of hospitalization and a hospital 30-day readmission rate of nearly 25 percent. A recognized gap in the uptake of research findings in clinical practice and treatment makes patient-centered outcomes research well-suited to improve the quality of life, functional status, and survival in patients with COPD.
The COPD Foundation, a national not-for-profit education, advocacy, and support group established by patients, will develop and host the COPD Patient Powered Research Network (CPPRN) in collaboration with the COPD Outcomes-based Network for Clinical Effectiveness and Research Translation (CONCERT) and COPDGene network. CPPRN endeavors to enroll 100,000 people with COPD, approximately 0.5 percent of the US COPD population, into a registry with a scalable data hub. Enrolled patients will represent the spectrum of COPD disease severity—across diverse geographic regions, broad age and socioeconomic ranges, both genders, all racial and ethnic groups, and most having multiple morbidities. To reach participants willing to share clinical information, report outcomes, and participate in patient-centered outcomes research, the network will contact the 228,701 patients with linked administrative and clinical data in the CONCERT network and another 10,300 patients with patient-reported outcomes and genetic data in the COPDGene network.