COPD Foundation and Bronchiectasis Research Registry (BRR)

Chronic obstructive pulmonary disease (COPD) is a critical part of U.S. health care affecting over 12 million individuals in the nation, is responsible for 800,000 hospitalizations per year, and recently became America’s 3rd 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 25% hospital 30 day readmission rate. Healthcare expenditures for re-hospitalizations in patients with COPD exacerbations rank as the third highest among Medicare beneficiaries. The continuing lag between clinical practice and treatment options described by efficacy studies to improve the quality of life, functional status, and survival in patients with COPD, make COPD ripe for patient-centered outcomes research. This project provides data analysis support for the COPD PPRN (Patient Powered Research Network). The analysis-ready datasets include over 220,000 EMR records from CONCERT; over 10,000 highly characterized COPDGene participants; and a growing number of COPD PPRN fully registered, consented, and contributing members that will total over 75,000 patients. Overall, the COPD PPRN has over 3,500 active participants enrolled from phase I initial efforts (2,102 on the registry side and over 1,400 on the online social exchange platform). This contract focuses on developing the data analysis plan for the COPD PPRN, generating reports and data analysis in response to specific partner requests, generating reports and analysis to be used in scientific manuscripts, and developing abstracts and completed statistical analysis as requested by partners at the foundation. In addition, this contract supports analysis of baseline and longitudinal data for the Bronchiectasis Research Registry (BRR) and includes conducting data analysis for reports and manuscripts for principal investigators involved in the BRR and composing abstracts and analysis as requested as per the description of the deliverables in the contract. Finally, analysis and data presentation for the state report card focused on the epidemiology of COPD is included in the scope of the work