COPD Foundation Enrolls First Patient in Patient-Powered Research Network, First Step in Advancing COPD Research
WASHINGTON, D.C. - September 3, 2014 Celebrating its 10th anniversary, The COPD Foundation (COPDF) announces today that it has enrolled the first patient in the COPD Patient- Powered Research Network (COPD PPRN), one of 29 health data networks connected to PCORnet, the National Patient-Centered Clinical Research Network. Funded by the Patient-Centered Outcomes Research Institute (PCORI), this new national resource aims to improve the speed, efficiency and use of patient-centered comparative effectiveness research (CER).
“The COPD PPRN comes at a critical time for COPD Research and for the U.S. healthcare system,” says Richard Mularski, M.D., Kaiser Permanente Center for Health Research (KPCHR), co-principal investigator, COPD PPRN. “Utilizing the COPD PPRN by integrating our network with 28 other networks will spur faster research to improve the health outcomes of individuals living with COPD.”
The COPD PPRN plans to enroll 75,000 people with COPD, approximately 0.5 percent of the U.S. COPD population, into a registry with a scalable data hub for the purpose of supporting patient-driven, patient-centered outcomes research. Enrolled patients will represent the spectrum of COPD severity – most with multiple morbidities, across diverse geographic regions, broad age and socio-economic ranges, both genders and all racial and ethnic groups.
“As someone living with COPD, I consider the COPD PPRN a huge step forward in terms of the level of research that is needed to refine testing and diagnosis, improve treatments and find a cure,” says John W. Walsh, president and co-founder of the COPD Foundation. “The COPD PPRN will reduce the time and effort needed to launch new studies, and focus research on questions and outcomes that will be especially useful to patients and those who care for them.”
If you are interested in enrolling in the COPD PPRN please visit www.copdpprn.org, or call the C.O.P.D. Information Line to speak with a trained patient or caregiver associate if you have any questions.
About the COPD Foundation:
The COPD Foundation was established to speed innovations which will make treatment more effective and affordable, to undertake initiatives that result in expanded services for COPD patients, and improve the lives of patients with COPD and related disorders (through scientific research, education & awareness) that will lead to prevention and a stop in the progression of COPD. Health care providers are encouraged to visit our new open access, peer-reviewed medical journal, Chronic Obstructive Pulmonary Diseases: Journal of the COPD Foundation.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed health care decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.