There has been a lot of progress in the understanding of PBC since the first meeting of researchers and doctors in 1996. Due to the rarity of the disease and the multiple factors that are thought to be involved in its occurrence, PBC remains a challenge for researchers.

We have been very fortunate in having many researchers around the world who are dedicated to putting the puzzle pieces together. A clearer picture of Primary Biliary Cirrhosis is slowly beginning to emerge. We will all celebrate when the final puzzle piece is put into place.

There are a number of new studies this year including itching and fatigue. An important advancement is the PBC animal model, which will provide additional answers.

It takes a very long time for researchers to get approval to try different medications on humans. The funds raised and the contributions of blood, urine, salvia and stool samples so many of us provided are providing very positive results.

Over the years, we have participated in fresh blood draws that Dr Gershwin and his staff collected at our annual PBC conferences, and most recently a local California meeting.

The studies have compared the white blood cells of people with PBC to those of a non-PBC control group, along with the cells of people with other liver diseases in order to see how the immune system works in these different groups. The study required a blood draw of about five tubes of blood that was very fresh, and it was flown back to the research lab immediately following the draw. Many others in our group have also participated in various PBC studies around the world.

The answers are within reach.

Sandra Tropple Stoddard, Executive Committee

History of the first PBCers Surveys

A PBCers survey was done in 1996 and a larger one in 1997-98.  Members of the group worked hard deciding which questions should be asked.  Linie received 138 responses which was just about the total group.  Her son, Ryan, was home on spring break and helped all week compiling the information.  Linie said they had papers all over the house. 

The 1996 survey became very important.  In 1997 Kathryn Krivy attended a symposium during the annual meeting of the American Association for the Study of Liver Disease (AASLD) in Chicago.  Meeting some of the research doctors, she was invited to attend a meeting in San Francisco organized and sponsored by the national office of the American Liver Foundation in April, 1998.  This meeting was a forum for PBC researchers to meet and compare notes.  It was attended by leading liver experts and renowned scientists brought together to examine the questions plaguing the understanding of PBC. 

At the meeting, Dr. Eric Gershwin was the chair and Dr. Keith Lindor was co-chair. Kathryn presented the completed PBCers survey and talked about our support group.  They understood the survey was not done scientifically but were incredibly impressed with the thoughtfulness of the questions and the detailed results.  They were very impressed with the number of responses to our survey.  The bottom line on the survey is that we demonstrated that we have a voice and that we can be extremely useful.

The PBCers started participating in research projects and today participate in projects world-wide. The first research project was women diagnosed with PBC who had male children. Then there was the siblings and twin study.  Not only have PBCers participated, but our family members and friends have also provided blood, salvia and stool samples.  This was the beginning of the large Epidemiological Study which was published in 2006.

PBCers around the world are still participating in various PBC research projects including  with doctors Gershwin and Lindor, but today our organization is helping fund some of those projects.

Read the questions and results of our previous surveys:

Survey 1996          Survey 1997          Survey 1998          Survey 2010

Classification of PBC Disease Profiles in a Contextual Setting 2001        

Information on Clinical Trials

Clinical Connection

Clinical Trials.Gov

Mayo Clinic Trials

PBC Daily Clinical Trials

Primary Biliary Cirrhosis Primer

Immunology Lab (Eric Gershwin, MD)

Welcome to the Immunology laboratory at UC Davis