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What has taken place in PBC research

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. It takes a very long time for researchers to get approval to try different medications on humans.  You will also notice the studies on fatigue and itching.

There is now a PBC animal model, which will provide additional answers.

The funds raised and the contributions of blood, urine, salvia and stool samples so many of us provided are providing very positive results.

If at all possible, we need to participate in studies. I was in a study which started in 1994 and enrolled a total of 265 patients. The study was in different medical centers in the US and was for approximately 9 years. We were randomized to either UDCA alone or UDCA in combination with methotrexate. The two groups were looked at in terms of treatment failures which were defined as death, transplantation, variceal bleeding, doubling of bilirubin, development of ascites, lowering of albumin or progression by 2 stages or to cirrhosis.

We had lab tests every three months, biopsies ever 2 years along with many other tests. The results of the study showed no difference in the two groups of adding methotrexate but it did give a history of a large number of patients with PBC.

I could go on about positive research. We were asked to participate in fresh blood draws that Dr Gershwin and his staff did last year in CA, WA, OR, AZ and the 2005 conference. The blood draws had to be within a certain distance from the U C Davis lab. The study 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.

The answers are within reach.

Sandra Tropple Stoddard, Executive Committee

Research & Clinical Trials

A Study of an Investigational Medication in Combination with Ursodeoxycholic Acid (URSO, UDCA) in Patients with Primary Biliary Cirrhosis

University of Michigan Ongoing Primary Biliary Cirrhosis Treatment Study

Mount Sinai Medical Center:  Does Vitamin D Supplementation Enhance Immune Function in Primary Biliary Cirrhosis?

Pilot Study of Fenofibrate for Primary Biliary Cirrhosis

Fluoxetine Hydrochloride Vs. Placebo for the Treatment of Fatigue Associated with Primary Biliary Cirrhosis

Understanding the Genetic Predisposition to the Development of Primary Biliary Cirrhosis

Fatigue and Health-Related Quality of Life Survey in Patients with Cirrhosis

Open-Label Pilot Investigation of Tacrolimus in Patients with Primary Sclerosing Cholangitis

Family Studies in Primary Biliary Cirrhosis (PBC)

SAMe to Treat Biliary Cirrhosis Symptoms

Identification of the Genetic Variants Responsible for Primary Biliary Cirrhosis

Treatment of Cholestatic Pruritus With Sertraline

Infections and Autoimmunity: Autobodies Screening in MS

Genetics of Hepatitis C Virus Infection

Differential Gene Expression of Liver Tissue and Blood From Individuals With Chronic Viral Hepatitis

Indocyangreen Elimination in Cirrhosis and Acute Liver Failure

Clinical Trials.Gov

All Mayo Clinic Trials

Columbia University - Nora Bergasa, MD Fatigue and Pruritus Clinical Trial 2003

Need participants for new research study: Combivir and PBC

Risk Factors & Comorbidities in Primary Biliary Cirrhosis:  A Controlled Interview-Based Study of 1032 Patients

Progress Update June 2005 "Genetic Epidemiology of PBC" by Konstantinos Lazaridis, MD

Summary of Research Presented by Keith Lindor, MD at the 2004 AASLD Conference

Ursodeoxycholic Acid Prolongs Life in Primary Biliary Cirrhosis

PBC Daily is another great site for PBC research.

Dr. Eric Gershwin's Lab

Welcome to the Immunology laboratory at UC Davis

Pilot Research Study  11-16-06

Food for thought about Primary Billiary Cirrhosis in 2006

UC Davis Immunology Lab - Our Goals

FYI - Immune System Boosters

Helping to find a Cure

Initial Study of Rituximab to Treat Primary Biliary Cirrhosis

Forging a Link between Xenobiotic and its Induction of Primary Biliary Cirrhosis in Mice Using 6-Bromohexanoate Conjugated to Bovine Serum Albumin

New insights to the immunopathology and autoimmune responses in primary biliary cirrhosis

PBCers are making history in largest research project of it's kind

Title of Study:  Epidemiologic Survey in Primary Biliary Cirrhosis

Participants in Research Study:  PBCers Support Group

Research Study:  University of California, Davis

Investigator's Names, Departments, Phone Number:  Dr. M. Eric Gershwin, Dr. Ellen Gold, Kathryn Krivy, Department of Internal Medicine, 752-2884

Purpose and Procedures:  The purpose of this study is to obtain historical information that might explain why some people are susceptible to a disease of the liver, called Primary Biliary Cirrhosis.  

Patient with PBC and sibling are ask to take the questionnaire.

We plan to enroll 5000 subjects in this project.

There is no compensation for completing the questionnaire. 

Project began July 6, l998.

Eric Gershwin, MD Updates

ALF PBC Fund the Cure Grants

PBCers Group Surveys

Please help us find a cure by participating in PBC Clinical Trials.