Registry-based Research Has Started, Pulmonary Fibrosis Foundation Announces at Summit


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The first research projects using data from the Pulmonary Fibrosis Foundation’s Patient Registry are under way, the foundation announced at an international conference in Nashville that bears its name.

A record 895 people attended the Pulmonary Fibrosis Foundation Summit Nov. 9-11, where doctors and scientists discussed the latest developments in the field. Topics ranged from new genetic discoveries to the need for better diagnosis of the life-threatening disease.

The foundation is now reviewing research proposals based on its patient registry data three times a year, with the next evaluation scheduled for January. The registry includes information on more than 1,500 patients. The foundation wants to increase it to 2,000 to make it the largest such repository in the world.

Foundation leaders came up with the idea of registry-based research projects to try to gin up interest in study topics that the pulmonary fibrosis community believes are important.

Two of the registry’s sponsors, Boehringer Ingelheim and Genentech, also helped sponsor the summit. Other sponsors of the conference included FibroGenVeractye, the Pete DeVito Memorial Foundation, the Hales Family Foundation, and the Chuck and Monica McQuaid Family Foundation.

“The PFF Summit engaged patients, scientists, and physicians in the discussion of how we can collaborate to gain a better understanding of pulmonary fibrosis,” William T. Schmidt, the foundation’s president and CEO, said in a press release. One way that patients are helping is by participating in clinical trials of potential therapies, he said.

An interesting feature of the summit was that some researchers who created poster session presentations of their work were chosen to deliver oral presentations as well. There were 76 poster presentations. A panel of experts selected the top six to be delivered orally as well.

The Best Poster Award went to Taylor Adams of the Yale University School of Medicine. His poster was titled “Single cell RNA-sequencing of thousands of cells from IPF lungs reveals cellular diversity of distinct cellular populations.”

Another important announcement from the foundation was that it plans to expand its Care Center Network next year. The network is a group of medical centers that can offer patients specialized personnel and resources.

The foundation developed the registry to promote research on topics such as identifying pulmonary fibrosis biomarkers, disease treatment and diagnosis patterns, and Care Center Networks sites’ impact on patient outcomes.

“The care centers are an opportunity to partner with the foundation and to partner with each other to move the care and understanding of pulmonary fibrosis forward,” said Dr. Gregory P. Cosgrove, the foundation’s chief medical officer.

“As part of our quest to provide patients with access to care less than two hours from their homes, we will open an application cycle for new Care Center Network sites in January,” he added.

The foundation also announced a partnership with monARC Bionetworks on a computer application called PF Health. The partners are developing the application to help patients share their health information with researchers. The app will also give users access to information and education materials the foundation has created.

You can download the PF Health app from the iTunes App Store.

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