What is the COPD PPRN?
The COPD Patient-Powered Research Network (COPD PPRN) is a patient registry of individuals with chronic obstructive pulmonary disease or who may be at risk for COPD who have agreed to share their health information and participate in research.
The COPD PPRN is unique in that it is overseen by a patient-led governing board and is slated to be the largest research registry for COPD. The information is kept in a secure database to be used for research-ultimately leading to a deeper understanding of the disease.
To request use of the COPD PPRN Registry, click here to access the Project Intake Form.
Why should I let my patients know about the COPD PPRN?plus
Inviting patients to take an active role in their disease is one way not only to empower patients but it also contributes information that can further COPD research.
Connecting patients with the COPD PPRN also connects them to COPD Foundation resources. On their personalized, secure study dashboard, COPD PPRN participants can see the Foundation’s latest videos and educational materials. In addition, after participants complete their surveys, they are able to see how their answers compare to the aggregate responses of all participants (e.g., demographics, comorbidities).
How can I let my patients know about the COPD PPRN?plus
You can tell your patients to sign up through the online portal – www.copdpprn.org – or we can send you materials (posters, postcards) to display at your clinics. Please email email@example.com if you would like us to send you materials.
Is the COPD PPRN accepting requests from researchers and healthcare providers?plus
Yes, we are accepting requests from researchers and investigators for queries, analysis and preparatory to research requests, clinical trial/study recruitment and questionnaires. Requests are received by the COPD Foundation and are reviewed by the COPD PPRN Research Review Committee (RRC) which is composed of both patients and researchers. Researchers must fill out the Project Intake Form.
COPD Patient-Powered Research Network Supported Studies
The COPD Patient-Powered Research Network (COPD PPRN) is a network of over 8,000 consented people with COPD and those at risk that has been utilized not only for recruitment but also for the conduct of studies that the COPD Foundation has run or collaborated on with other organizations.
Below is a list of the studies that have utilized the COPD PPRN.
COPDF lead or supported studies:
- CAP Study - COPD and Pneumonia Study (COMPLETED) - Survey study designed to measure and understand the burden of community acquired pneumonia in people with COPD. The objectives of this study were to: (1) assess the symptom burden of CAP; (2) report time to symptom recovery; and (3) assess the impact of CAP on daily activities from the COPD patient perspective. The study was a collaboration between Pfizer and the COPD Foundation.
- COPD INVEST Study - Observational, Non-Interventional, Direct-to-Patient Study to Assess Patient Experience Using a Biometric Shirt to Collect Activity, Cardiac, Respiratory, and Sleep Data in a Non-Randomized, Unblinded Sample of Subjects with Chronic Obstructive Pulmonary Disease (COMPLETED) - Observational study to evaluate people with COPD’s experience with a biometric smart shirt as well as assessed the compliance and integrity of the data uploaded from the device in terms of the number of sessions uploaded and the completeness of the data. The study was a collaboration between Sunovion Pharmaceuticals, the COPD Foundation, IQVIA, and Carré Technologies, Inc.
- ESSENCE Study - Assessment of Patient Interaction with Ellipta Sensor and Integrated System Within the COPD Foundation Patient Powered Research Network (COMPLETED) - The study aimed to determine the level of engagement of sensor enabled inhalers amongst COPD users as well as gather adherence and rescue inhaler use patterns. The study was a collaboration between GlaxoSmithKline, the COPD Foundation and Propeller Health.
- O2VERLAP - Monitoring & Peer Support to Improve Treatment Adherence and Outcomes in Patients with Overlap COPD and Sleep Apnea (COMPLETED) - Comparative effectiveness randomized controlled trial were comparing the effectiveness of a proactive care (web-based peer coaching education and support intervention based on scheduled interactions and outreach) versus reactive care (education and support based on limited scheduled interactions and patient-initiated contacts) on improving adherence to continuous positive airway pressure (CPAP) therapy in patients diagnosed with both COPD and OSA. This study was conducted by the COPD Foundation and the American Sleep Apnea Association and sponsored by the Patient Centered Outcomes Research Institute (PCORI).
- Patient Journey (COMPLETED) - This observational study recruited patients who participated in online focus groups (3) and an online survey, created based on responses to the focus groups. The survey asked questions covering a range of topics including age and circumstances of diagnosis to their current treatment, including access to medication and education on how to use their therapies. This study was designed with the aim to gain a better understanding of the treatment and life journey of people with COPD. This study was sponsored by GlaxoSmithKline and conducted by the COPD Foundation.
- SHIPPS - Shingles Patient Prevention Study (COMPLETED) - A survey to gather information about how people with COPD and health care professionals caring for them think about shingles (also known as herpes zoster), flu and pneumonia vaccines. This study was funded by GlaxoSmithKline and conducted by the COPD Foundation.
Studies Utilizing COPD PPRN for Recruitment:
- Airflow-3 Pivotal Trial - A Multicenter, Randomized, Sham-controlled Study to Evaluate Safety and Efficacy After Treatment with the Nuvaira™ Lung Denervation System in Subjects with Chronic Obstructive Pulmonary Disease (SUPPORTED RECRUITMENT - ONGOING) - Superiority design trial, double-blinded, randomized and sham-controlled, 400 patients plus approximately 80 patients (worldwide) who will receive treatment as an unblinded "roll-in" group (first 3 patients treated in each center). This study is a collaboration with the University of Pittsburgh and Nuvaira.
- Block-COPD - Beta Blockers for the Prevention of Acute Exacerbations of COPD (SUPPORTED RECRUITMENT) - Multicenter, prospective, randomized, double-blind, placebo-controlled study, that compared a beta-blocker drug called metoprolol succinate with a placebo to determine if the drug can improve outcomes for people with moderate to severe COPD. This study was run by the University of Alabama and sponsored by the Department of Defense. NCT02587351
- Healthy Mind, Health You: A Dose Finding Study of Mindfulness (SUPPORTED RECRUITMENT) - The study randomized participants to either eight sessions of online mindfulness-based treatment (“standard”) or a briefer, three-session online mindfulness-based treatment (“light”) to compare the treatments’ efficacy and acceptability across a wide range of conditions including COPD and special populations. NCT03844321
- LEEP - Losartan Effects on Emphysema Progression (SUPPORTED RECRUITMENT) - This randomized clinical trial evaluating the effect of Losartan in helping people with Chronic Obstructive Pulmonary Disease (COPD) with emphysema. The study was run by Johns Hopkins, and sponsored by NHLBI with support from ALA. NCT02696564
- Matinee - Mepolizumab as Add-on Treatment IN Participants With COPD Characterized by Frequent Exacerbations and Eosinophil Level (SUPPORTED RECRUITMENT - ONGOING) - A multi-center, randomized, placebo-controlled, double-blind, parallel group study designed to conﬁrm the beneﬁts of mepolizumab treatment on moderate or severe exacerbations in COPD participants given as an add on to their optimized maintenance COPD therapy. This study is sponsored by GlaxoSmithKline. NCT04133909
- Patient Preferences for Endobronchial Valve Treatment of Severe Emphysema (SOLE RECRUITER FOR STUDY) - The online study asked participants to complete 1 survey about their experiences with emphysema and their opinions about various aspects of emphysema treatments. Results from the nearly 300 patients participating in the study demonstrated the significant limitations that emphysema puts on a patient’s life. The study was sponsored by Pulmonx.
- PTC-NEMO-INSIGHT - INtervention Study In overweiGHT Patients With COPD (SUPPORTED RECRUITMENT) - A multicenter, patient-level randomized, pragmatic clinical trial to produce first-ever data on the effectiveness of an evidence-based self-directed lifestyle intervention for 12 months targeting modest weight loss and increased physical activity among overweight and obese patients with COPD. The study was a collaboration with the University of Pittsburgh and the NIH. NCT02634268
- RELIANCE – Roflumilast or Azithromycin to Prevent COPD Exacerbations (SUPPORTED RECRUITMENT – ONGOING) - The RELIANCE study is a national study designed to compare two medicines currently used by lung doctors, azithromycin and roflumilast (Daliresp®). The study aims to find out which medicine works to control COPD attacks better for different types of people. The study sponsor is Johns Hopkins and is funded by the Patient-Centered Outcomes Research Institute (PCORI). NCT04069312
- RESOLUTE - Efficacy and Safety of Benralizumab in Moderate to Very Severe Chronic Obstructive Pulmonary Disease (COPD) With a History of Frequent Exacerbations (SUPPORTED RECRUITMENT – ONGOING) - A phase III placebo-controlled RCT, helping to evaluate an investigational study drug that two previous studies have shown might reduce moderate-to-severe symptom flare-ups for people living with COPD. This study is sponsored by AstraZeneca. NCT04053634
- WILLOW - Assessment of INS1007 Subjects with Non-Cystic Fibrosis Bronchiectasis (SUPPORTED RECRUITMENT) - Phase 2 randomized, double-blind, placebo-controlled, parallel-group, multicenter, multi-national study to assess the efficacy, safety and tolerability, and pharmacokinetics (PK) of INS1007 administered once daily for 24 weeks in subjects with non-cystic fibrosis bronchiectasis (NCFBE). The purpose of the study was to evaluate if INS1007 can reduce pulmonary exacerbations over a 24-week treatment period in patients with non-cystic fibrosis bronchiectasis. The study was sponsored by Insmed. NCT03218917