COPD Patient-Powered Research Network

NCT02803242 | Recruiting

• 1 other identifier: COPDPPRN
• Study Type: observational
• Target: 75,000
• Locations: 1 country
• Sites: 1

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.

Conditions

Chronic Obstructive Pulmonary Disorder; Chronic Obstructive Lung Disease; Emphysema; Chronic Bronchitis

Keywords

copd; emphysema; bronchitis; bronchiectasis

Outcome Measures

Primary Outcomes (4)

• 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

Interventions

Patient Reported Outcomes OTHER

Also known as: Patient reported outcomes will be collected using self-report questionnaires to asses lung health status

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• 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.

You may qualify if:

• 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

You may not qualify if:

• Non-English speaking

Sponsors & Collaborators

• COPD Foundation: lead
• Kaiser Foundation Hospitals, Center for Health Research: collaborator

Study Sites (1)

COPD Foundation

Washington D.C., District of Columbia, 20001, United States

RECRUITING

MeSH Terms

Conditions

Pulmonary Disease, Chronic Obstructive; Emphysema; Bronchitis, Chronic; Bronchitis; Bronchiectasis

Interventions

Patient Reported Outcome Measures

Condition Hierarchy (Ancestors)

Lung Diseases, Obstructive; Lung Diseases; Respiratory Tract Diseases; Chronic Disease; Disease Attributes; Pathologic Processes; Pathological Conditions, Signs and Symptoms; Respiratory Tract Infections; Infections; Bronchial Diseases

Intervention Hierarchy (Ancestors)

Health Care Surveys; Surveys and Questionnaires; Data Collection; Epidemiologic Methods; Investigative Techniques; Health Services Research; Health Planning; Health Care Economics and Organizations; Patient Outcome Assessment; Outcome Assessment, Health Care; Outcome and Process Assessment, Health Care; Quality of Health Care; Health Services Administration; Health Care Quality, Access, and Evaluation; Health Care Evaluation Mechanisms; Public Health; Environment and Public Health

Central Study Contacts

Gretchen M McCreary, MA

CONTACT

866-731-2673; gmccreary@copdfoundation.org

Elisha Malanga

CONTACT

866-731-2673; emalanga@copdfoundation.org

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: OTHER
• Target Duration: 15 Years
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: June 14, 2016
• First Posted: June 16, 2016
• Study Start: August 1, 2014
• Primary Completion: January 1, 2025
• Study Completion (Estimated): January 1, 2030
• Last Updated: March 10, 2022

Record last verified: 2022-03

Locations

US (1)