The Pulmonary Care and Research Collaborative (PCRC) is a Massachusetts 501(c)(3) tax exempt nonprofit organization founded in 2013. The mission of the PCRC is to establish a nationwide data infrastructure for conducting patient-centered clinical and biomedical research in pulmonary diseases. The PCRC is working to create collaborative networks of patients, clinicians, and investigators to enable studies that are larger, more efficient, and more cost-effective than traditional studies and enable discoveries that improve patient outcomes. It will utilize and extend well adopted open-source bioinformatics platforms and data warehouse technology developed through the NIH National Centers for Biomedical Computing and Clinical and Translational Science Awards (CTSA) Programs, and the ONC Strategic Health IT Advanced Research Projects (SHARP). Together these platforms provide a solid foundation for a scalable Health IT infrastructure and access to untapped data sources that enable real-time collaborative population health research to answer patient-oriented questions and improve human health.
The interstitial lung diseases are a group of over 150 pulmonary disorders that share some basic common features. These diseases affect the lung tissue in a manner that impairs gas exchange and results in chronic symptoms of shortness of breath and cough. The biological pathways involved are multiple and poorly understood, though the end result of these processes are progressive inflammation, and/or scarring in the lungs. Research in the past 10-15 years has advanced the understanding of the etiology and pathogenesis of interstitial lung diseases, yet treatment of most of these disorders remains unsatisfactory.
The Interstitial Lung Disease (ILD) Collaborative is the PCRC’s first clinical care and research network. Its institutional core is comprised of academic ILD Centers in the Boston-Providence area. The objectives of the ILD Collaborative include promoting communication and partnership amongst patients and physicians, advancing the understanding of causes and mechanisms of the interstitial lung diseases, facilitating their earlier recognition, and improving and tailoring their management and treatment by both physicians and patients. By integrating clinical, laboratory, and radiological data with patient-reported outcomes into a single interoperable registry, the ILD Collaborative data infrastructure and bioinformatics platforms will allow the study of shifts in treatment patterns, disease exacerbations, efficacy of new drugs, comparative effectiveness of established therapies, side effect management, health-related quality of life and other areas.