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COPD Patient-Powered Research Network (COPD PPRN)

This study is currently recruiting participants.
See Contacts and Locations
Verified June 2016 by COPD Foundation
Kaiser Foundation Hospitals, Center for Health Research
Information provided by (Responsible Party):
COPD Foundation Identifier:
First received: June 14, 2016
Last updated: June 16, 2016
Last verified: June 2016
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.

Condition Intervention
Chronic Obstructive Pulmonary Disorder Chronic Obstructive Lung Disease Emphysema Chronic Bronchitis Other: Patient Reported Outcomes

Study Type: Observational [Patient Registry]
Study Design: Observational Model: Cohort
Target Follow-Up Duration: 15 Years
Official Title: COPD Patient-Powered Research Network

Further study details as provided by COPD Foundation:

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 ]

Estimated Enrollment: 75000
Study Start Date: August 2014
Estimated Study Completion Date: January 2030
Estimated Primary Completion Date: January 2025 (Final data collection date for primary outcome measure)
Intervention Details:
    Other: Patient Reported Outcomes
    Other Name: Patient reported outcomes will be collected using self-report questionnaires to asses lung health status

Ages Eligible for Study:   18 Years and older   (Adult, Senior)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   Yes
Sampling Method:   Non-Probability Sample
Study Population
English speaking individuals who are over the age of 18 and have a diagnosis of COPD or fall into one of the following categories that put's them at risk - current or former smoker, environmental/occupational exposure, family history of respiratory disease or symptomatic of respiratory disease.

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
  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its identifier: NCT02803242

Contact: Cara B Pasquale, MPH 866-731-2673 ext 312
Contact: Elisha Malanga 866-731-2673 ext 309

United States, District of Columbia
COPD Foundation Recruiting
Washington, District of Columbia, United States, 20001
Contact: Cara B Pasquale    866-731-2673 ext 312   
Sponsors and Collaborators
COPD Foundation
Kaiser Foundation Hospitals, Center for Health Research
  More Information

Responsible Party: COPD Foundation Identifier: NCT02803242     History of Changes
Other Study ID Numbers: COPDPPRN
Study First Received: June 14, 2016
Last Updated: June 16, 2016

Keywords provided by COPD Foundation:

Additional relevant MeSH terms:
Lung Diseases
Pulmonary Emphysema
Bronchitis, Chronic
Lung Diseases, Obstructive
Pulmonary Disease, Chronic Obstructive
Respiratory Tract Diseases
Pathologic Processes
Bronchial Diseases
Respiratory Tract Infections processed this record on August 18, 2017