New Canadian PBC Patient Registry

In 2016, we designated the proceeds of the Canadian PBC Society’s signature fundraising event, A Day at the Races, to support PBC education, awareness and research at the Toronto Centre for Liver Disease.


More than $11,000 was raised through the event and these funds have now been committed to a special project that will help enhance and leverage the national PBC patient registry that is being established through CaNAL (Canadian Network for Autoimmune Liver Disease).


The CaNAL registry will make it possible to track and follow-up patient medical history and all relevant clinical events over the long term – and on a national scale. The registry will include both existing and newly-diagnosed patients.


We’re encouraged to see that this national research initiative is intended to achieve the following results for patients who are living with PBC:


  • Early and accurate diagnosis of disease; 

  • Personalized investigations, treatments and monitoring to help to prevent disease progression and the need for liver transplantation;

  • Accurate assessment of a patient’s risk for developing liver-related complications;
  • Identification of potential new therapies; and 

  • Improved quality of life and long-term health for PBC patients


    Through our support, we are helping to build awareness of the registry among patients at CaNAL sites. This will include opportunities for patients like you to participate in current and future studies, and will help to bring new CaNAL sites into the network. 

  • PBC Prevalence Study released

    See the first Canadian PBC Prevalence study published March, 2017. The objectives of this study were to estimate and characterize the PBC population and associated PBC liver transplant recipients across Canada.


    The study:
  • Estimates the prevalence of PBC
  • Describes the PBC patient population
  • Estimates the prevalence of PBC liver transplants
  • Describes the PBC liver transplant population


    Read full study
  • Rare Disease Day – Focus on Research

    Congratulations to the 2017 recipient of our Outstanding PBC Research Award – Dr. Andrew Mason, Co-Director of the Centre for Excellence for Gastrointestinal Inflammation & Immunity Research, University of Alberta. Canadian PBC Society recognizes Dr. Andrew Mason for his contribution and dedication to PBC Research and his ongoing commitment to his PBC patients. A world leader in PBC research and treatment, he has worked tirelessly on behalf of PBC patients. For over a decade, he has focused his research on establishing a link between the human betaretrovirus (HBRV) and PBC.


    Dr. Mason’s patients said


    • “Dr Mason was instrumental in developing treatment for PBC; he has worked extensively with fibroscan, transplant, gene research, patient care and education. His years in England, the US and ultimately in Canada at the University of Alberta have provided a wealth of new information on PBC and it’s treatment”


    • “Dr Mason attends our PBC support meetings and provides education about this illness to the general public.”


    • “Dr Mason has always treated me with respect and I am so fortunate to have him as my doctor.”


    • “Dr. Mason has spent his entire research career searching for the cause and treatment of PBC. His dedication to this disease is unlike no other. He makes his patients priority in his life. As one of his long term patients, for the last 17 years, he has made my battle with this disease so much easier. Even at the time of liver transplant, he was at my bedside everyday to ensure my continued healthy recovery. He is so determined to put an end to PBC that he says that his life’s work will not be done until the cause and cure for this disease has been found. Dr Mason definitely deserves this grant for his commitment to PBC.”


      Join us in congratulating Dr. Andrew Mason!