Large-scale COPD patient network in the works

June 18, 2015

A large chronic obstructive pulmonary disease (COPD) patient network is in the works.

A large chronic obstructive pulmonary disease (COPD) patient network is in the works.

The COPD Foundation’s COPD360 program is being assembled to accelerate research and foster innovation for COPD.

“The data will allow physicians to gain greater insight into the disease as well as patient priorities,” says Elisha Malanga, senior director of research, tells Medical Economics. “The information provided will allow physicians to develop best practices based on patient feedback.”

The program will enroll 125,000 patients to databases on an integrated research registry composed of the COPD Patient-Powered Research Network and physician registries. Once fully realized in the next three to five years, COPD360 will combine patient-reported outcomes, clinical data, electronic medical records, and observational research into what the Foundation says to be one of the largest COPD research networks ever assembled. Patients entered into the registry have agreed to share their health information and testimonies on how COPD has impacted their lives.

Part of the COPD360 platform is COPD360social, a social collaborative platform that brings together the patient, caregiver, and provider communities into one location to share information, have ongoing conversations, and engage with one another.

“COPD360 was developed to help researchers develop enhanced therapies and ultimately a cure for COPD,” Malanga says. “The platform will provide patient-centered, comprehensive information about COPD that will be kept in a secure database, ultimately leading to a deeper understanding of the disease.”

According to Malanga, of the top 10 deadliest diseases in the United States, COPD is the only disease with mortality rates on the rise.

“Despite being the third leading cause of death in the United States, there are only 780 ongoing trials for COPD,” she says. “This pales in comparison to the over 41,000 trials taking place in cancer research. 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.”

AstraZeneca provided $2.5 million to the COPD Foundation for the COPD360 initiative. The funding will be used to build out the patient research portal and data center and to deploy a comprehensive patient outreach and awareness program to support enrollment.