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| Name | Class |
|---|---|
| Kaiser Foundation Hospitals, Center for Health Research | OTHER |
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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.
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Patient Reported Outcomes | Other |
|
| Measure | Description | Time Frame |
|---|---|---|
| Patient Reported Outcome Measurement Information System-29 (PROMIS-29) | 15 years | |
| COPD Assessment Test (CAT) | 15 years | |
| Modified Medical Research Council (MMRC) Dyspnea Scale | 15 years | |
| Charlson Comorbidity Index (CCI) | 15 years |
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Inclusion Criteria:
Exclusion Criteria:
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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.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Gretchen M McCreary, MA | Contact | 866-731-2673 | 396 | gmccreary@copdfoundation.org |
| Elisha Malanga | Contact | 866-731-2673 | 309 | emalanga@copdfoundation.org |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| COPD Foundation | Recruiting | Washington D.C. | District of Columbia | 20001 | United States |
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| ID | Term |
|---|---|
| D029424 | Pulmonary Disease, Chronic Obstructive |
| D004646 | Emphysema |
| D029481 | Bronchitis, Chronic |
| D001991 | Bronchitis |
| D001987 | Bronchiectasis |
| ID | Term |
|---|---|
| D008173 | Lung Diseases, Obstructive |
| D008171 | Lung Diseases |
| D012140 | Respiratory Tract Diseases |
| D002908 | Chronic Disease |
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| ID | Term |
|---|---|
| D000071066 | Patient Reported Outcome Measures |
| ID | Term |
|---|---|
| D019538 | Health Care Surveys |
| D011795 | Surveys and Questionnaires |
| D003625 | Data Collection |
| D004812 | Epidemiologic Methods |
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| D020969 |
| Disease Attributes |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |
| D012141 | Respiratory Tract Infections |
| D007239 | Infections |
| D001982 | Bronchial Diseases |
| D008919 |
| Investigative Techniques |
| D006302 | Health Services Research |
| D006285 | Health Planning |
| D004472 | Health Care Economics and Organizations |
| D063868 | Patient Outcome Assessment |
| D017063 | Outcome Assessment, Health Care |
| D010043 | Outcome and Process Assessment, Health Care |
| D011787 | Quality of Health Care |
| D006298 | Health Services Administration |
| D017530 | Health Care Quality, Access, and Evaluation |
| D017531 | Health Care Evaluation Mechanisms |
| D011634 | Public Health |
| D004778 | Environment and Public Health |