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COPD Patient-Powered Research Network (COPD PPRN)

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details. Identifier: NCT02803242
Recruitment Status : Recruiting
First Posted : June 16, 2016
Last Update Posted : March 10, 2022
Kaiser Foundation Hospitals, Center for Health Research
Information provided by (Responsible Party):
COPD Foundation

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.

Condition or disease Intervention/treatment
Chronic Obstructive Pulmonary Disorder Chronic Obstructive Lung Disease Emphysema Chronic Bronchitis Other: Patient Reported Outcomes

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Study Type : Observational [Patient Registry]
Estimated Enrollment : 75000 participants
Observational Model: Cohort
Time Perspective: Other
Target Follow-Up Duration: 15 Years
Official Title: COPD Patient-Powered Research Network
Study Start Date : August 2014
Estimated Primary Completion Date : January 2025
Estimated Study Completion Date : January 2030

Intervention Details:
  • Other: Patient Reported Outcomes
    Other Name: Patient reported outcomes will be collected using self-report questionnaires to asses lung health status

Primary Outcome Measures :
  1. Patient Reported Outcome Measurement Information System-29 (PROMIS-29) [ Time Frame: 15 years ]
  2. COPD Assessment Test (CAT) [ Time Frame: 15 years ]
  3. Modified Medical Research Council (MMRC) Dyspnea Scale [ Time Frame: 15 years ]
  4. Charlson Comorbidity Index (CCI) [ Time Frame: 15 years ]

Information from the National Library of Medicine

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, Learn About Clinical Studies.

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Ages Eligible for Study:   18 Years and older   (Adult, Older Adult)
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

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its identifier (NCT number): NCT02803242

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Contact: Gretchen M McCreary, MA 866-731-2673 ext 396
Contact: Elisha Malanga 866-731-2673 ext 309

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United States, District of Columbia
COPD Foundation Recruiting
Washington, District of Columbia, United States, 20001
Contact: Gretchen M McCreary, MA    866-731-2673 ext 396   
Sponsors and Collaborators
COPD Foundation
Kaiser Foundation Hospitals, Center for Health Research
Additional Information:

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Responsible Party: COPD Foundation Identifier: NCT02803242    
Other Study ID Numbers: COPDPPRN
First Posted: June 16, 2016    Key Record Dates
Last Update Posted: March 10, 2022
Last Verified: March 2022
Keywords provided by COPD Foundation:
Additional relevant MeSH terms:
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Bronchitis, Chronic
Lung Diseases
Pulmonary Emphysema
Lung Diseases, Obstructive
Pulmonary Disease, Chronic Obstructive
Respiratory Tract Diseases
Pathologic Processes
Respiratory Tract Infections
Bronchial Diseases