Who Are We?
The PBC Research Foundation (PRF) stands apart from other registries and data collection sources by ensuring that all patient data is fully owned and controlled by the patients themselves. Unlike traditional registries that often limit participation to clinical trial patients or select groups, PRF captures data from all PBC patients, creating a comprehensive and inclusive dataset. Our secure, regulatory-compliant database not only collects medical records but also digitizes and imports them free of charge on a weekly basis, ensuring real-time accuracy and accessibility. Additionally, PRF integrates biospecimens alongside real-world natural history data, offering a complete and unbiased view of disease progression and treatment response. Through our patient-first approach, we prioritize transparency, collaboration, and direct engagement with scientists, industry partners, and clinicians to drive meaningful advancements in PBC research and treatment.
Our Mission
The mission of the PBC Research Foundation (PRF) is to accelerate the path to clinical treatments for rare liver diseases by harnessing the power of patient-centered and patient-owned data. Our primary focus is on Primary Biliary Cholangitis (PBC), where we work directly with patients to collect and analyze real-world, regulatory-compliant data that reflects the true impact of the disease. By advocating for patient ownership of data and fostering collaboration with researchers, clinicians, regulatory boards, and industry partners, we bridge the gap between data collection and clinical breakthroughs. Beginning in our second year, we will expand our efforts to include other liver disorders, identifying common genetic factors and biomarkers that can unlock new therapeutic possibilities. At PRF, we believe that by putting patients at the heart of research, we can transform the future of liver disease treatment and improve lives worldwide.