Our Research Framework
The COPD Foundation Research Framework (COPD360) strategically aligns the goals of all COPD Foundation stakeholders including: patients, health care professionals, caregivers, academic, government, advocacy groups 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
A rapidly growing global network of patients, friends, and caregivers engaged through the COPD360Social platform (over 48,000 participants in 151 countries) and the Patient Powered Research Network (COPD PPRN) (over 7,800 participants) which enables active participation of patients in clinical trials, surveys and focus groups and the COPD360 Community Engagement Committee (COPD360CEnCo).
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)
A committed and talented staff with the support of our Medical And Scientific Expert Advisors established collaborations and partnerships.
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)
Enables Clinical Trials, Surveys and Focus Groups
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.
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.
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.
Provide operational Support as needed: eConsent, data collection (surveys, integration of external data), focus groups, efficient communication to participants.
Access to robust analytical tools for surveys and focus groups.
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.
The COPD360 technology infrastructure includes multiple core systems. Rather than taking a system-centric view and treating each of these core systems independently, we have taken a holistic and integrated view with the goal of creating an integrated suite of applications designed to cohesively work together. This provides a consistent and efficient experience for the user, minimizes the duplication of functionality and increases our efficiency at collecting and sharing data.
The more types of data and information we can collect, the more valuable it is for analysis activities that extend beyond simple queries and reports and lead to advanced ‘data mining’ wherein we can discover patterns and relationships, identify sentiment or uncover new information. This is accomplished by deploying advanced analytics such as Natural Language Processing (NLP) and visual text analytics.
Support for Patient-Centered Clinical Development Plans
Available COPD360 Resources
- Assess the relevance and importance of the research question to patients and caregivers (discuss with patient advocates)
- Integrate patient and caregiver insights and perspective into the study design (surveys, focus groups)
- Input into innovative Clinical Development approaches (COPD360 Data interrogation)
- Construct successful recruitment strategies
- Implement data dissemination strategies in lay terms
COPD360 Research Framework
The COPD360 research framework provides a powerful, flexible, HIPAA compliant infrastructure for managing longitudinal research studies and clinical trials.
- The COPD360 research framework includes a care management solution, called COPD360coach 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.
- The COPD360 research framework 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, the COPD360 research framework has the ability to integrate data from an external data source, like CPAP machines or Electronic Medical Records (EMR), and bring them into The COPD360 research framework infrastructure in a way that can be utilized by the study team.
If you wish to discuss a COPD360 research study, consulting services, or COPD360Social surveys and focus groups, please contact Elisha Malanga, Chief Research Officer - email@example.com.
For PPRN study applications visit the For Researchers page.