Details and Information
Areas of Focus: Chronic Obstructive Pulmonary Disease (COPD), Bronchiectasis, Chronic Bronchitis, Emphysema, refractory (non-reversible) asthma
Population Characteristics: Multiple co-morbidities
Organization: COPD Foundation
Contact: Cara Pasquale at [email protected]
Principal Investigator: Barbara Yawn, MD
Co-Principal Investigator: Richard A. Mularski, MD and William Clark
The COPD Patient-Powered Research Network (COPD PPRN) was founded by the COPD Foundation and partners with the Center for Health Research at Kaiser Permanente Northwest with the purpose of enabling increased and faster research for COPD to find better treatments and ultimately cures. COPD is a critical part of US healthcare, affecting 12–24 million individuals in the nation, is responsible for 800,000 hospitalizations per year and is America’s third leading cause of death. More research is needed to help the millions of individuals suffering from COPD and the COPD PPRN seeks to close the gap in research through bringing thousands of COPD patient partners and those at risk together who are willing to share their information and participate in research (watch this video to learn more).
By bringing research and patients together in the COPD PPRN, along with other crucial stakeholders in the COPD community, we are fostering the innovative health data vision of PCORnet and engage the COPD community to be a part of the activities that strive to explore the questions that matter most to patients and their families. Through this network, crucial COPD studies such as RofLumilast or Azithromycin to prevent COPD Exacerbations (RELIANCE) and Monitoring & Peer Support to Improve Treatment Adherence and Outcomes in Patients with Overlap Chronic Obstructive Pulmonary Disease and Sleep Apnea via a Large PCORnet Collaboration (02VERLAP) have already been funded and are underway. Additionally, the COPD PPRN is dedicated to bringing COPD patient partners, community stakeholders, medical professionals and family member together on the COPD Foundation’s COPD360° Social Online Community Platform to facilitate support, knowledge sharing and provide crucial resources.