Chronic Obstructive Pulmonary DisorderCOPD PPRNNCT02803242
COPD Patient-Powered Research Network
An observational study of Chronic Obstructive Pulmonary Disorder and Chronic Obstructive Lung Disease, run by COPD Foundation at 1 site in United States.
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. Read more about this study
- Who is it for?
- Ages 18 years and olderHealthy volunteers can take part
- Conditions the study is for
- Chronic Obstructive Pulmonary Disorder, Chronic Obstructive Lung Disease, Emphysema
- What is being tested?
- Patient Reported Outcomes
- How many people
- 75,000 participants
- Where
- 1 siteUnited States
- Study dates
- Aug 2014to Jan 2030
- How long will I take part?
- 15 Years
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- Healthy volunteers accepted
- Adult, Older adult
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.
Who may be able to join
- 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
Who cannot join
- Non-English speaking
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
United States1 site, 1 recruiting
- Recruiting
COPD Foundation
Washington D.C., District of Columbia, 20001
Gretchen M McCreary, MA, 866-731-2673 ext. 396, gmccreary@copdfoundation.org
About this study
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
- Being tested
- Patient Reported Outcomes
- Keywords
- copd, emphysema, bronchitis, bronchiectasis
- Medical subject headings
- Pulmonary Disease, Chronic Obstructive, Emphysema, Bronchitis, Chronic, Bronchitis, Bronchiectasis
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
Patient Reported OutcomesOther
Also called Patient reported outcomes will be collected using self-report questionnaires to asses lung health status
What is being measured
The primary outcome is the main question the study is designed to answer.
Patient Reported Outcome Measurement Information System-29 (PROMIS-29)
Measured: 15 years
COPD Assessment Test (CAT)
Measured: 15 years
Modified Medical Research Council (MMRC) Dyspnea Scale
Measured: 15 years
Charlson Comorbidity Index (CCI)
Measured: 15 years
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted16 Jun 2016 (estimated)
- Study startAug 2014
- Primary completionJan 2025 (estimated)
- Study completionJan 2030 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Chronic Obstructive Pulmonary DisorderStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Other
- Enrolment
- 75,000 participants (estimated)
- Target duration
- 15 Years
Sponsor and investigators
- Lead sponsor
- COPD Foundation
- Sponsor type
- University, hospital or other
- Collaborators
- Kaiser Foundation Hospitals, Center for Health Research
- Responsible party
- Sponsor
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT02803242
- Sponsor's protocol ID
- COPDPPRN
- Acronym
- COPD PPRN
- Status last verified
- Mar 2022
- First submitted
- 14 Jun 2016
- Last updated
- 10 Mar 2022
- Results posted
- No
- Data monitoring committee
- No
Study at a glance
From the registry record, last updated by the sponsor on 10 Mar 2022. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- COPD Patient-Powered Research Network
- ClinicalTrials.gov ID
- NCT02803242
- Acronym / sponsor ID
- COPD PPRN / COPDPPRN
- Conditions
- Chronic Obstructive Pulmonary Disorder, Chronic Obstructive Lung Disease, Emphysema, Chronic Bronchitis
- Keywords
- copd, emphysema, bronchitis, bronchiectasis
- Study type
- Observational
- Recruitment status
- Recruiting
- Enrolment
- 75,000 participants (estimated)
- Lead sponsor
- COPD FoundationUniversity, hospital or other
- Collaborators
- Kaiser Foundation Hospitals, Center for Health Research
- Study start
- Aug 2014
- Primary completion
- Jan 2025 (estimated)
- Study completion
- Jan 2030 (estimated)
- First posted
- 16 Jun 2016 (estimated)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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.
Study design
- Observational model
- Cohort
- Time perspective
- Other
- Target follow-up
- 15 Years
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Accepted
- Age groups
- Adult, Older adult
- 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.
Key inclusion criteria (5 listed)
- 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
Key exclusion criteria (1 listed)
- Non-English speaking
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| Patient Reported OutcomesAlso: Patient reported outcomes will be collected using self-report questionnaires to asses lung health status | Other | – |
Primary outcome
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
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 10 Mar 2022.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Chronic Obstructive Pulmonary Disorder and Chronic Obstructive Lung Disease, run by COPD Foundation at 1 site in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 5 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: looking for participants now, as of the sponsor's last update on 10 Mar 2022. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Gretchen M McCreary, MA (866-731-2673 ext. 396, gmccreary@copdfoundation.org), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Patient Reported Outcome Measurement Information System-29 (PROMIS-29) (time frame: 15 years). The study lists 4 primary outcomes in all. It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 10 Mar 2022.