Brigham and Women's to launch center for research on rare liver disease - The Boston Globe

Brigham and Women’s Hospital has announced that it is launching a first-in-the-nation center to undertake research into primary sclerosing cholangitis, a rare chronic liver disease that can only be treated effectively by a liver transplant.

The new center, under the direction of Dr. Joshua Korzenik, will take a multipronged approach to finding new treatments for PSC, which affects about 30,000 people in the United States, most of them young men, hospital officials said in a statement.

The launch of the Resnek Family Center for Primary Sclerosing Cholangitis Research is being supported by a “transformative” $20.2 million gift from Frank and Barbara Resnek, hospital officials said. Frank Resnek is a partner of Fenway Sports Group, parent company of the Boston Red Sox. (The principal owner of FSG is John Henry, who also owns the Globe.) Barbara Resnek is a retired family law attorney.

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The Resneks launched a national search for PSC research and treatment options that brought them to Korzenik and the Brigham, hospital officials said.

“We are exceedingly grateful to the Resneks for their gift, the largest investment in PSC research nationally and around the world. Their generosity will serve as a turning point in PSC research and bring much-needed resources and attention to this rare and debilitating disease,” Dr. Betsy Nabel, president of Brigham Health, the hospital’s parent organization, said in the statement.

PSC disrupts normal liver function and slowly causes cirrhosis and liver failure. The causes are not known, but the disease is linked to ulcerative colitis. Up to 80 percent of PSC patients also have ulcerative colitis, hospital officials said.

The hospital said Korzenik had brought together a team of researchers in Boston and around the world who are experts in gastroenterology, hepatology, immunology, pathology, and translational medicine (the process of converting basic research into clinical treatments).

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The researchers are going to search for the causes of PSC, studying the role of genes, microbiota, environmental triggers, and the immune system. The goal is to develop and test new drugs that will keep PSC from progressing, hospital officials said.

“Research into rare diseases can be challenging, as it is difficult to find enough patients and samples to conduct meaningful trials,” Korzenik said in the statement. With the Resnek family’s help, “we can accelerate the timeline for findings that will have the potential to advance therapies for PSC and inform care for other gastrointestinal diseases.”

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