Our Research Framework


COPD360 Research Framework

Our Mission

The COPD Foundation Research Framework (COPD360) strategically aligns the goals of all COPD stakeholders: patients, healthcare professionals, caregivers, and academic, government and industry partners. Our mission is to ensure a central role for the patient/caregiver in all stages of research including project feasibility, study design, implementation, and dissemination of results.


The 4 Pillars of COPD360

Community Engagement

A rapidly growing global network of patients, friends, and caregivers engaged through COPD360Social platform (over 46,000 participants in 140 countries) and the Patient Powered Research Network (PPRN, over 7800 participants) which enables active participation of patients in clinical trials, surveys and focus groups.

Credibility & Partnership

Established strong technical, analytics and logistics infrastructure in compliance with global Privacy and Good Clinical Practice Guidelines enables a strong partnership with Industry, NIH, PCORI and global academic researchers in advancing the development of novel therapies. The COPD Foundation is engaged in multiple Public-Private Partnerships (e.g. the COPD Biomarker Qualification Consortium, The CAT Governance Board, the PPRN Governance Board) and partnered in multiple clinical trials (examples: the ongoing study CAPTURE, or the completed study PELICAN)

Global Network

A committed and talented staff with the support of our Medical And Scientific Expert Advisors established collaborations and partnerships.

Impact

Our successful collaborative projects impacted patient education (COPD Pocket Consultant Guide mobile app) and care (PRAXIS), informed researchers on areas of unmet need in COPD through studies like COPDGene, SPIROMICS and BRIDGE, provide free access to free peer-reviewed publication (JCOPDF) and delivered important surveys and focus groups on the COPD360Social community (e.g O2verlap)


COPD360 Infrastructure
Enables Clinical Trials, Surveys and Focus Groups

Exporing the Research Question

Exploring the Research Question

Assess the relevance and importance of the research question to patients and caregivers through online surveys and focus groups or data mining of the COPD Foundation databases.

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Study Design and Feasibility

Study Design and Feasibility

Integrate patient and caregiver insights to study design, identify potential patient advisors and trial investigators that will review and comment on draft protocols. Query COPDF research databases to define feasibility of elegibility criteria.

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Trial Recruitment

Trial Recruitment

Facilitate recruitment in a primed community of potential participants by approaching individuals who meet eligibility criteria and disseminating information about the study throughout the COPD Foundation Global Community.

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Study Execution

Study Execution

Provide operational Support as needed: eConsent, data collection (surveys, integration of external data), focus groups, efficient communication to participants.

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Data Analysis

Data Analysis

Access to robust analytical tools for surveys and focus groups.

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Results Dissemination

Results Dissemination

Support results dissemination to a broad audience using COPD360Social, Awareness campaigns, PRAXIS Buzz, JCOPDF, Patient Partners (State Captains and COPD PPRN), and Faces of COPD.


COPD360research

COPD360research provides a powerful, flexible, HIPAA compliant infrastructure for managing longitudinal research studies and clinical trials.

  • COPD360research includes a care management solution designed to deliver educational content through structured workflows. This unique care management solution enables peer-to-peer health coaches to efficiently manage and communicate with participants in a health coaching program. Utilized in recent studies including the PCORI funded O2verlap study, patients have expressed appreciation for the peer to peer interaction.
  • COPD360research offers the opportunity for sophisticated data integration projects utilizing the Corepoint integration engine. The integration engine is a middleware component within our research infrastructure that enables us to manage the communication between disconnected systems and external data sources. Essentially, COPD360research has the ability to integrate data from an external data source, like CPAP machines or Electronic Medical Records (EMR), and bring them into the COPD360research infrastructure in a way that can be utilized by the study team.

COPD Foundation Patient Centered Research


If you wish to discuss a research study in COPD360 please contact
Elisha Malanga, Chief Research Officer - emalanga@copdfoundation.org

For COPD360Social surveys and Focus Groups please contact
Sara Latham, Chief Operating Officer – slatham@copdfoundation.org

For PPRN study applications visit the For Researchers page.


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Online comments from COPD360 study participants (July 2019)

"I did the study and learned so much about how to deal with the CPAP. The modules were easy and the people were friendly and I didn’t even have to leave the house. Everything was by phone and online in my own time. It was great and I helped the cause."


"This study was great. I learned so much from the online modules and the folks that called were friendly and the best part was no clinics. You don’t have to go anywhere."

Research 101 for Patients & Caregivers


Research 101 for Patients & Caregivers | Click to watch the video.