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COPD Patient-Powered Research Network (COPD PPRN)

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ClinicalTrials.gov Identifier: NCT02803242
Recruitment Status : Recruiting
First Posted : June 16, 2016
Last Update Posted : June 17, 2016
Sponsor:
Collaborator:
Kaiser Foundation Hospitals, Center for Health Research
Information provided by (Responsible Party):
COPD Foundation

Study Description
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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

Study Design
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Study Type : Observational [Patient Registry]
Estimated Enrollment : 75000 participants
Observational Model: Cohort
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
Groups and Cohorts
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Intervention Details:
  • Other: Patient Reported Outcomes
    Other Name: Patient reported outcomes will be collected using self-report questionnaires to asses lung health status

Outcome Measures
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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 ]

Eligibility Criteria
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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.
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
Contacts and Locations
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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 ClinicalTrials.gov identifier (NCT number): NCT02803242


Contacts
Contact: Cara B Pasquale, MPH 866-731-2673 ext 312 cpasquale@copdfoundation.org
Contact: Elisha Malanga 866-731-2673 ext 309 emalanga@copdfoundation.org

Locations
United States, District of Columbia
COPD Foundation Recruiting
Washington, District of Columbia, United States, 20001
Contact: Cara B Pasquale    866-731-2673 ext 312    cpasquale@copdfoundation.org   
Sponsors and Collaborators
COPD Foundation
Kaiser Foundation Hospitals, Center for Health Research
More Information
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Responsible Party: COPD Foundation
ClinicalTrials.gov Identifier: NCT02803242     History of Changes
Other Study ID Numbers: COPDPPRN
First Posted: June 16, 2016    Key Record Dates
Last Update Posted: June 17, 2016
Last Verified: June 2016

Keywords provided by COPD Foundation:
copd
emphysema
bronchitis
bronchiectasis

Additional relevant MeSH terms:
Lung Diseases
Emphysema
Pulmonary Emphysema
Bronchitis
Bronchitis, Chronic
Lung Diseases, Obstructive
 Pulmonary Disease, Chronic Obstructive
Respiratory Tract Diseases
Pathologic Processes
Bronchial Diseases
Respiratory Tract Infections