PRESS

Updated: August 10, 2007

First Patient Enrolls in STOPSC Registry  

Drs. Whitington and Black welcome Matthew Sledge as the first patient to be enrolled in the STOPSC Registry.

On Monday, July 16, Matthew Sledge, a 10-year-old from Water Valley, Miss., was the first patient to be enrolled in the STOPSC registry, a multi-center database and DNA repository for patients with primary sclerosing cholangitis (PSC). The registry is sponsored by the Musette and Allen Morgan, Jr. Foundation for the Study of Primary Sclerosing Cholangitis, headquartered at Le Bonheur Children’s Medical Center.

PSC is a rare disease that causes the bile ducts inside and outside of the liver to become scarred, narrowed and eventually blocked. Often the only effective treatment for this debilitating disease is a liver transplant. While children are waiting for a liver transplant, they suffer with such symptoms as severe abdominal pain, jaundice, growth failure and a profound lack of energy.

The STOPSC (Studies of Primary Sclerosing Cholangitis) registry includes clinical information on children and adults with PSC, autoimmune hepatitis and PSC/autoimmune hepatitis overlap syndrome. Especially in children, there appears to be a relationship between PSC and autoimmune hepatitis. The registry, which is based at Le Bonheur Children’s Medical Center, will comprise a database of patient information and DNA samples for genetic studies. The STOPSC project will facilitate collaborative, hypothesis-driven, multi-center research on this rare disease. Le Bonheur is one of 13 major North American medical centers encompassing 18 pediatric and adult hepatology programs participating in the registry. The EMMES Corporation in Rockville, MD, has been contracted to serve as the STOPSC Data Coordinating Center.

Partners in this registry include:

• University of Colorado, Denver
• University of California, San Francisco
• University of Cincinnati
• Northwestern University, Chicago
• Hospital for Sick Children, Toronto
• Harvard, Boston
• Mayo Clinic, Rochester
• Mt. Sinai, New York
• Le Bonheur Children’s Medical Center and University of Tennessee Health Science Center
• Virginia Commonwealth, Richmond
• Tufts, Boston
• University of California, Davis
• University of Pittsburgh, Children’s Hospital of Pittsburgh

Dr. Dennis Black is Co-Director of the Morgan Foundation and Study Chair for STOPSC,  as well as Le Bonheur Vice President for Research and Director of the Children’s Foundation Research Center at Le Bonheur. “I’m excited that Matthew will help kick off the STOPSC registry. This represents a major milestone in research for this devastating disease. We hope that Le Bonheur sets the tone for this collaborative relationship with our other partners across the US and Canada,” Black said.

In addition to the major support from the Morgan Foundation, the funding to begin the DNA repository portion of STOPSC was donated by PSC Partners Seeking a Cure (www.pscpartners.org). PSC Partners Seeking a Cure is a national PSC patient support organization founded in 2005 to raise funds to research the causes and cure for PSC, promote PSC and organ donation awareness and provide education and support to PSC patients and their families.

The Morgan Foundation, founded in 2004 by Musette and Allen Morgan, Jr., sponsors and facilitates basic and clinical research to discover new treatments and ultimately a cure for primary sclerosing cholangitis. Dr. Gene Whitington, a Le Bonheur pediatric gastroenterologist who cares for the Morgans’ son, Worth, who has PSC, was the driving force for the creation of the Morgan Foundation and serves as its Director.

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