COPD Patient-Powered Research Network
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: Patient Reported Outcomes.
- Who it may be relevant to
- Registry conditions: Chronic Obstructive Pulmonary Disorder, Chronic Obstructive Lung Disease, Emphysema, Chronic Bronchitis. Basic parameters: from 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- United States
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Overview
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
- Other Patient Reported Outcomes
Primary outcome measures
- Patient Reported Outcome Measurement Information System-29 (PROMIS-29) [Time frame: 15 years]
- COPD Assessment Test (CAT) [Time frame: 15 years]
- Modified Medical Research Council (MMRC) Dyspnea Scale [Time frame: 15 years]
- Charlson Comorbidity Index (CCI) [Time frame: 15 years]
Eligibility criteria
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
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: Yes
Study design
- Observational model
- Cohort
Study locations
United States · 1 center
- COPD Foundation — Washington D.C.
Identifiers
NCT: NCT02803242 · COPDPPRN