Chronic Bronchitis, Chronic Obstructive Lung Disease, Chronic Obstructive Pulmonary Disorder, Emphysema
Conditions
Keywords
copd, emphysema, bronchitis, bronchiectasis
Brief summary
The COPD Patient-Powered Research Network (COPD PPRN) is a patient research registry with the goal of enrolling 75,000 or more COPD patients and those at risk who are willing to share their heath information over several years and participate in research. The COPD PPRN has built an online platform to allow volunteers to enroll electronically, complete surveys, be contacted about studies they qualify for and become connected to COPD resources. The goal of the registry is to speed research to find better treatments for COPD and ultimately a cure.
Interventions
OTHERPatient Reported Outcomes
Sponsors
Kaiser Foundation Hospitals, Center for Health Research
COPD Foundation
Study design
Observational model
COHORT
Time perspective
OTHER
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
* 18 years or older that says yes to one of the following: * COPD diagnosis * Current or former smoker * Family history of respiratory disease * Symptomatic of respiratory disease
Exclusion criteria
* Non-English speaking
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Patient Reported Outcome Measurement Information System-29 (PROMIS-29) | 15 years |
| COPD Assessment Test (CAT) | 15 years |
| Modified Medical Research Council (MMRC) Dyspnea Scale | 15 years |
| Charlson Comorbidity Index (CCI) | 15 years |
Countries
United States
Contacts
Primary ContactGretchen M McCreary, MA
Backup ContactElisha Malanga
Outcome results
None listed