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 firstname.lastname@example.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.