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IntroductionThis site provides a compilation of www resources and scientific literature on primary sclerosing cholangitis (PSC), a chronic cholestatic liver disease characterized by periductal inflammation of both intrahepatic and extrahepatic bile ducts. Progressive loss of bile ducts impairs bile flow, ultimately resulting in liver cirrhosis. Males are affected by PSC more often than females (2:1), and the disease is often accompanied by inflammatory bowel disease; mostly ulcerative colitis and sometimes Crohn's disease. The exact causes of PSC are unknown, but it is thought that the disease might be triggered by as yet unidentified environmental factor(s) in genetically susceptible individuals. The genetic basis of PSC is likely to be complex; certain of the genes determining susceptibility are thought to reside in the major histocompatibility complex - a genetic region of central importance in a number of autoimmune diseases. Because PSC is often associated with inflammatory bowel disease, the complex genetic basis of ulcerative colitis and Crohn's disease may be relevant to understanding how PSC is initiated and sustained. The National Institute of Diabetes and Digestive and Kidney Diseases, the Office of Rare Diseases, and the Morgan Foundation jointly sponsored a Primary Sclerosing Cholangitis Conference in Bethesda, MD, September 19-20, 2005. The aims of the meeting were to stimulate clinical and basic research interest in PSC and identify gaps in knowledge and challenges for medical research in this disease: The Morgan Foundation has also recently established a research initiative entitled STOPSC: 'Studies of Primary Sclerosing Cholangitis'. STOPSC is a collaborative effort between centers in the United States and Canada whose primary objective is to collect and analyze information required to understand the etiology, pathogenesis, and treatment of primary sclerosing cholangitis (PSC). Researchers who are interested in learning more about STOPSC should contact the STOPSC Data Coordinating Center (see About STOPSC).
Our son was diagnosed with primary sclerosing cholangitis (PSC) and ulcerative colitis (UC) in the summer of 2003 immediately following his graduation from high school. As a result we are trying to inform ourselves about PSC and UC and the management of these diseases. Our literature search results are posted here for the benefit of others with PSC and/or inflammatory bowel diseases (UC or Crohn's disease). Our literature surveys have also included articles on primary biliary cirrhosis (PBC), autoimmune hepatitis (AIH), autoimmune cholangitis, non-alcoholic steatohepatitis (NASH), Wilson's disease, hemochromatosis, and progressive familial intrahepatic cholestasis (PFIC). Because PSC and PBC are thought to be autoimmune diseases our literature surveys have also considered other autoimmune diseases such as autoimmune thyroid diseases, Celiac disease, Sjogren's syndrome, systemic lupus erythematosus, psoriasis, psoriatic arthritis, rheumatoid arthritis, spondyloarthropathies, and type I diabetes. The newest additions to our literature database will routinely be posted here:
This site is very pleased to be associated with PSC Partners Seeking a Cure (www.pscpartners.org), a 501(c)3 nonprofit foundation that endeavors to find a cure for Primary Sclerosing Cholangitis. Today this liver disease has no specific treatment. PSC is affecting the lives of too many people including young children, college students, mothers, fathers, and grandparents. With no treatment or cure, people with this disease are suffering and dying while awaiting the uncertainty of a liver transplant. Little is known about this disease and its course is hard to predict. What isn't hard to predict is the heart break the next family will experience when PSC strikes them. Patients and caregivers need support and information. We desperately need research for treatment and a cure for PSC now. Please consider a donation to help us conquer this devastating disease. For more information about how to make a tax-deductible donation, please visit PSC Partners Seeking a Cure (www.pscpartners.org).
 The three-fold purpose of the PSC Partners Seeking a Cure foundation is to:
(ii) promote PSC and organ donation awareness, and (iii) provide education and support to PSC patients and their families.
For Email Marketing you can trust
PSC Partners Seeking a Cure has recently donated $40,000 to support the STOPSC research initiative of the Morgan Foundation; see press release from: Memphis Business News, Jan 8, 2007.
PSC Partners Seeking a Cure will award a $3,000 prize annually at the annual meeting of the American Association for the Study of Liver Diseases (AASLD). The following announcement of the annual award is from AASLD: 58th Annual Meeting of the American Association for the Study of Liver Diseases: PSC Partners Seeking a Cure Award This award shall be given to one investigator presenting the most promising PSC research at The Liver Meeting® 2007. All abstracts submitted to the Human Cholestatic and Autoimmune Liver Diseases Category, PSC descriptor will be considered for this award (there is not a formal application process for this award). Notification will be made in August. This award can be used to support travel and accommodation expenses associated with participation in the AASLD Annual Meeting, or for supplies and expenses for PSC research. The awardee will also be invited to attend the PSC Partners Seeking a Cure Annual Conference (www.pscpartners.org). AASLD gratefully acknowledges PSC Partners Seeking a Cure for their generous support of this award. The 2008 PSC Partners Seeking a Cure Conference was held May 2-4, 2008 at the Mayo Clinic in Jacksonville, Florida:
For those newly diagnosed with PSC, and/or their caregivers, we highly recommend joining a PSC support group:
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