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COPD Patient-Powered Research Network (COPD PPRN)
This study is currently recruiting participants.
Verified June 2016 by COPD Foundation
Sponsor:
COPD Foundation
Collaborator:
Kaiser Foundation Hospitals, Center for Health Research
Information provided by (Responsible Party):
COPD Foundation
ClinicalTrials.gov Identifier:
NCT02803242
First received: June 14, 2016
Last updated: June 16, 2016
Last verified: June 2016
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Purpose
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
Eligibility| 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.
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
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 ClinicalTrials.gov identifier: NCT02803242
Please refer to this study by its ClinicalTrials.gov identifier: 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
| Responsible Party: | COPD Foundation |
| ClinicalTrials.gov 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:
|
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 |
ClinicalTrials.gov processed this record on August 18, 2017