COPD Patient-Powered Research Network

Emphysema Clinical Trial

— COPD PPRN  

Official title:

COPD Patient-Powered Research Network

Clinical Trial Details — Status: Recruiting

Administrative data

• NCT number: NCT02803242
• Other study ID #: COPDPPRN
• Status: Recruiting
• Start date: August 2014
• Est. completion date: January 2030

Study information

• Verified date: March 2022
• Source: COPD Foundation
• Contact: Gretchen M McCreary, MA
• Phone: 866-731-2673
• Email: gmccreary[@]copdfoundation.org
• Is FDA regulated: No
• Study type: Observational [Patient Registry]

Clinical Trial 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.

Recruitment information / eligibility

• Status: Recruiting
• Enrollment: 75000
• Est. completion date: January 2030
• Est. primary completion date: January 2025
• Accepts healthy volunteers: Accepts Healthy Volunteers
• Gender: All
• Age group: 18 Years and older

Eligibility

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

Related Conditions & MeSH terms

• Bronchitis
• Bronchitis, Chronic
• Chronic Bronchitis
• Chronic Obstructive Lung Disease
• Chronic Obstructive Pulmonary Disorder
• Emphysema
• Lung Diseases
• Lung Diseases, Obstructive
• Pulmonary Disease, Chronic Obstructive
• Pulmonary Emphysema

Intervention

Other:
• Patient Reported Outcomes

Locations

Country	Name	City	State
United States	COPD Foundation	Washington	District of Columbia

Sponsors (2)

Lead Sponsor	Collaborator
COPD Foundation	Kaiser Foundation Hospitals, Center for Health Research

Country where clinical trial is conducted

United States, 

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	Patient Reported Outcome Measurement Information System-29 (PROMIS-29)		15 years
Primary	COPD Assessment Test (CAT)		15 years
Primary	Modified Medical Research Council (MMRC) Dyspnea Scale		15 years
Primary	Charlson Comorbidity Index (CCI)		15 years