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 PBC Research Foundation is dedicated to accelerating the path to clinical treatments for rare liver diseases by harnessing the power of patient-centered and patient owned data. Our initial focus is on Primary Biliary Cholangitis (PBC), working hand-in-hand with patients to collect and analyze real-world regulatory and compliant, data that is non-biased and can serve as the voice of the patients.

Through strong patient advocacy and collaboration with researchers, clinicians, regulatory boards and PBC stakeholders, we strive to bridge the gap between data collection and clinical breakthroughs and advancing the fields of research and treatment. Beginning in year two, we will expand our scope to other liver disorders, identifying common genetic factors and biomarkers to unlock new therapeutic possibilities.

By putting patients at the heart of discovery, we aim to transform the landscape of liver disease research and improve lives worldwide.