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NIH, Morgan Foundation Sponsor PSC Conference
The NIH Holds a National Conference on PSC Thanks to the Morgans
The National Institutes of Health is sponsoring a major conference
on a rare but devastating disease thanks to the efforts of the Le
Bonheur-based Musette & Allen Morgan Jr. Foundation for the
Study of Primary Sclerosing Cholangitis (PSC).
The Primary Sclerosing Cholangitis Conference will be held Sept.
19-20 at the Lister Hill Conference Center, National Institutes
of Health, in Bethesda, Md. But the impetus for the conference
came from the Morgan Foundation, which was established in 2004,
said Dr. Dennis Black, co-director of the Morgan Foundation and
scientific director of the Children’s Foundation Research Center
at Le Bonheur.
The foundation is funded by Musette and Allen Morgan Jr. The Morgans’
son, Worth, was diagnosed with PSC by Dr. Gene Whitington at age
10 and began treatment for the disease. Worth Morgan currently is
free of PSC symptoms. Dr. Whitington is director of the Morgan
Foundation.
PSC is a rare liver disease that causes the bile ducts inside and
outside the liver to become inflamed, scarred and blocked. There
is a great deal of controversy about how to treat the disease, which
is thought by some to be an autoimmune disorder, Dr. Black said.
Most patients are treated with a synthetic form of bear bile, which
protects the liver from injury and stimulates the bile flow, Dr.
Black said.
The purpose of the PSC conference is to pull together experts to
assess what is known and not known about the illness and to put
together a research agenda, Dr. Black said. There will be 27 speakers
at the conference, all of whom are experts in liver disease in adults
and children.
PSC Conference sponsors include The Morgan Foundation, the National
Institute of Diabetes and Digestive and Kidney Diseases and the
Office of Rare Diseases.
Dr. Black credits Dr. Jay Hoofnagle, director of the liver disease
research branch in the NIH, for expanding the scope of the conference
because of his interest in PSC.
In addition to helping plan the conference, The Morgan Foundation
also is taking the lead in forming a PSC registry among liver centers
so that a database of information on adult and pediatric PSC patients
can be assembled. The nearly 20 participating centers include Le
Bonheur, The Mayo Clinic, Harvard University, the University of
Cincinnati, Northwestern University and the Hospital for Sick Children
in Toronto, Canada.
The first meeting of some of the registry participants took place
in July at The Peabody, and the registry could be up and running
as early as the first half of 2006 with initial funding from The
Morgan Foundation, Dr. Black said. Ultimately, Dr. Black said they
hope to obtain NIH backing for the registry and put together a multi-center
consortium for research in PSC.
PSC affects only 8 out of 100,000 people in the Western population,
but it is devastating and costly, and patients usually require a
liver transplant, Dr. Black said. Many who suffer from PSC also
contract cholangiocarcinoma. Football star Walter Peyton died from
PSC.
For more information about the conference, see https://www.niddk.nih.gov/fund/other/primarysclerosing.
For more information about The Morgan Foundation, see www.pscfoundation.org.
The Morgan Foundation Forms PSC Registry
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