COPD Patient Powered Research Network

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COPD PPRN

Are you looking for a way to make a difference and let your voice be heard? The COPD Patient-Powered Research Network (COPD PPRN) is an opportunity to join a community of individuals who want to revolutionize COPD research. The COPD PPRN will be the largest network of patients affected by Chronic Obstructive Pulmonary Disease (COPD) ever assembled.

Despite being the 3rd leading cause of death, according to clinicaltrials.gov, there are only 780 ongoing trials for COPD. This pales in comparison to the over 41,000 trials taking place in cancer research.

This page includes the following details related to the PPRN:

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COPD PPRN

The COPD Patient-Powered Research Network will be a research registry of over 75,000 individuals with COPD who have agreed to share their health information and the impact the disease has on their lives. Operated and governed by groups of patients and their partners, the information is kept in a secure database to be used for research – ultimately leading to a deeper understanding of the disease.

Research Promotion

It is estimated that more than 300 million individuals worldwide have COPD, but there is no resource to connect COPD researchers and people interested in participating in COPD research. By joining the COPD PPRN, you will enable this registry to serve as a clinical research resource for researchers and people who want to participate in COPD research.

Want to learn more?

Here are some frequently asked questions about the research network:

What is the COPD Patient-Powered Research Network?plus

The COPD PPRN will be a network of over 75,000 patients with COPD who have agreed to share their health information and the impact the disease has on their lives. Operated and governed by groups of patients and their partners, the information will be kept in a secure database to be used for research - ultimately leading to a deeper understanding of the disease.

Am I eligible to enroll?plus

Anyone over the age of 18 who responds "yes" to at least one of the following is eligible:

  1. Have either been told by a doctor that you do have COPD.
  2. Have a family history of respiratory disease.
  3. Are a current or former smoker.
  4. Symptomatic of respiratory disease (for example, including but not limited to coughing, shortness of breath or wheezing).
  5. Have had a possible or known environmental/occupational exposure that may put you at risk for a respiratory disease (environmental/occupational exposure includes but is not limited to second hand smoke, indoor and/or outdoor air pollution).

Am I automatically enrolled in studies/clinical trials?plus

No. You are not automatically enrolled in a clinical trial or a study. By joining the COPD PPRN you fill out a brief survey and will only be contacted in the future for participation in potential voluntary studies. Any clinical trials or studies you are contacted for in the future are voluntary and you do not have to participate.

Will I have to undergo any medical testing or undergo invasive medical procedures?plus

No. By enrolling you are only agreeing to share your health information.

Will I have to take new medication or change my current medication?plus

No. The COPD PPRN is not a clinical trial and no changes will be made to your treatment regimen.

Will enrollment in the COPD PPRN affect my current health insurance?plus

No. Enrollment in the research network will not affect your health insurance.

Who is sponsoring the COPD PPRN?plus

Initial funding for this project came from the Patient Centered Outcomes Research Institute (PCORI) in Washington, DC. PCORI was authorized by Congress in 2010 to conduct research to provide information about the best available evidence to help patients and their health care providers make more informed decisions.

Is my information secure?plus

Yes, your information will be kept in a secure database. To protect your confidentiality we will use only secure computers and secure ways of moving your information.

Do I have to enroll?plus

No. Enrollment in COPD PPRN is completely voluntary. You may withdraw at any time.

How do I get started?plus

After clicking the enroll button you will be directed to the login page. Once there, you will be asked to carefully review and sign an informed consent document and fill out a survey. Once both actions are completed, you are officially part of the COPD PPRN.

What if I have questions now or need help with the process?plus

We are here to help! You can contact the COPD Foundation at 1-866-316-COPD (2673) with any questions. For study specific questions please ask to speak with the study coordinator at the COPD Foundation at copdpprn@copdfoundation.org.

Where can I find information about clinical trials that are actively recruiting?plus

You can find information about clinical trials by visiting clinicaltrials.gov. You can also find information on our website about studies that are utilizing the COPD PPRN for recruitment.

COPD360 Proposal Review Committee (PRC)

The COPD360 Proposal Review Committee (PRC) is charged by the COPD Foundation with helping to further the mission of patient-centered research and speeding crucial research that matters most to patients.

The main purpose of the COPD360 PRC is to review and prioritize requests to use the COPD360 Platform for research (including, but not limited to studies, surveys, ideation and focus groups).

To request use of the COPD360 Platform, click here to access the Project Intake Form.

Review Process:

The PRC will review each proposal based on criteria provided by the COPD Foundation. The reviews will take place in a timely manner. The PRC will have two weeks to make a decision. Specifically, the COPD Foundation charges the PRC with the following responsibilities:

  • To review requests to ensure that the proposed research aligns with the goal of the COPD Patient-Powered Research Network (PPRN) to expedite research designed to improve patient lives and conduct research that matters to patients;
  • To determine if additional information is required from requester;
  • To provide recommendations to the COPD PPRN Governing Board on whether or not to approve requests for proposals that include the use of the PPRN.

There are 3 Types of COPD Foundation Research Proposals:

1) COPD PPRN Registry only

This includes requests to use the COPD PPRN for clinical trial recruitment and questionnaires. The following information will be considered.

  • Type of Research Request?
  • Are patients being engaged throughout the process? How?
  • Pros to acceptance of the Research Request?
  • Cons to acceptance of the Research Request?
  • Any other Concerns?
  • Proposal Review Committee Recommendation: Yes/No

2) COPD360social Only

This includes use of COPD360social for a survey, focus group, blog post or voting activity. In addition, this category includes requests to generate study awareness through the COPD Foundation distribution lists or via web pages other than COPD360social.

The PRC reviews these proposals using the above criteria and with a focus on patient centeredness. If requests are approved, the COPD Foundation Chief Research Officer or a designee will notify the requester and begin the necessary process to define scope of work, budget development and contracting.

3) COPD360Social and PPRN Registry

Will follow the review process for #1 and #2

COPD360 Proposal Review Committee Composition:

  • Two COPD Foundation Medical & Scientific Advisory Committee (MASAC) Representatives (1 collective vote)
  • COPD PPRN Study Principal Investigator (member of the COPD PPRN Governing Board)
  • COPD PPRN Governing Board Member Patient Representative
  • COPD Foundation Chief Scientific Officer

The COPD360 PRC has 3 additional ex-officio members:

  • COPD Foundation Chief Research Officer or delegate
  • COPD Foundation Chief Operating Officer or delegate
  • COPD PPRN Governing Board Member Patient Representative

Confidentiality Attestation: This statement will be sent to the PRC with each research request by the supporting COPD Foundation Staff Member:plus

Members should maintain confidentiality of any PROPRIETARY OR TRADE SECRET information that they become aware of SOLELY through participation on this group, committee or consortium. Members may not use any such information for their personal benefit, the benefit of their associates, or the benefit of organizations with which they are connected or with which they have a financial involvement, including firms that provide financial, investment, or other business advice. If at any time a member believes he or she has a possible conflict of interest with any information that is or is to be discussed, the member should not hesitate to disclose the conflict and recuse himself or herself from the discussion.

For Researchers

What is the COPD PPRN?

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 copdpprn@copdfoundation.org 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.

Recruiting/Ongoing

  • 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. NCT03639051
  • 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
  • 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

Active

  • LEEP - Losartan Effects on Emphysema Progression (SUPPORTED RECRUITMENT, trial not actively recruiting) - 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

Suspended/Terminated

  • Block-COPD - Beta Blockers for the Prevention of Acute Exacerbations of COPD - 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

Completed

  • CAP Study - COPD and Pneumonia Study - 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 - 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 - 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 - 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 - 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 - 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.
  • 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
  • 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
  • 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