COPD Patient-Powered Research Network for Adults with or at Risk of Chronic Obstructive Lung Diseases

What this Trial Is About

Researchers are building a large patient registry called the COPD Patient-Powered Research Network, which aims to enroll 75,000 or more people with Chronic Obstructive Pulmonary Disorder COPD, Chronic Obstructive Lung Disease, Emphysema, or Chronic Bronchitis, as well as those at risk. This registry uses an online platform where volunteers can enroll, complete surveys, and be contacted about research opportunities. The goal is to accelerate research to find better treatments and ultimately a cure for COPD. Participants in this observational study provide patient-reported outcomes through surveys over many years. The registry collects information such as the Patient Reported Outcome Measurement Information System-29 PROMIS-29, COPD Assessment Test CAT, Modified Medical Research Council MMRC Dyspnea Scale, and Charlson Comorbidity Index CCI. Volunteers can participate from home using an electronic platform designed to connect them to COPD resources and research studies. During the study, participants will regularly complete surveys and questionnaires related to their respiratory health and symptoms. Researchers will use these patient-reported outcomes to better understand COPD and related conditions over time. The study allows for long-term observation and data collection to support ongoing research, with participation continuing until January 2030 or longer depending on individual involvement.

COPD Patient-Powered Research Network