The Crohn’s and Colitis Center waiting room is intended to feel more like home than a hospital for its patients. Instead of stiff-backed chairs, people sit on benches with plush cushions or read a book in a library-like nook. Paintings and photos of favorite vacation destinations hang in the hallways. On the walls of the waiting rooms and exam rooms, stenciled quotes and a world map remind patients that they are not alone.
It’s all part of the patient-centered approach to care that Joshua Korzenik, MD, has cultivated. Korzenik, the director of the Crohn’s and Colitis Center and the Resnek Family Center for Primary Sclerosing Cholangitis Research, is acutely aware of the impact that inflammatory bowel diseases (IBD) such as Crohn’s disease and ulcerative colitis (UC) have on a person’s life. Korzenik’s wife and son both have UC. The family recently found out that one of their beloved cats has the feline equivalent of primary sclerosing cholangitis, a rare and related condition.
Sitting in his office at the Crohn’s and Colitis Center on a recent winter afternoon, Korzenik pulled up photos of his son cuddling their pet. “They drive my passion for both research and treatment,” said Korzenik. “I think about these conditions everyday and it fuels my commitment.”
Korzenik has been involved in IBD research and care of patients for more than 25 years, but as a medical student and resident, he thought he would go into primary care. Korzenik spent time overseas treating children in India with malnutrition and saw firsthand issues of morbidity and mortality. But he was drawn to the field of gastroenterology because of the many unanswered questions that shroud IBD.
“I became seduced by questions in science,” said Korzenik. “While we now have effective therapies, we still don’t understand these diseases. I still have a primary care orientation when I see patients. And I think this particular patient population draws me as well — my patients have a chronic illness that often develops at a young age. It’s a lifelong condition and we want to empower them to take care of themselves.”
Korzenik has helped develop new models to deliver better care for patients. These models often use a team approach — the Crohn’s and Colitis Center currently includes a nutritionist, a mind/body specialist who helps patients focus on stress management, a nurse educator, a mental health specialist and a health coach.
“A person with Crohn’s or colitis might see their provider for a handful of hours each year. The majority of the time, they are managing their condition and taking care of themselves on their own. We want to focus on the tools to allow them to do so,” said Korzenik.
Tackling a Challenging Disease
In addition to treating patients at the Crohn’s and Colitis Center, Korzenik is leading an effort to understand and treat a condition known as primary sclerosis cholangitis (PSC). PSC affects 3 to 7 percent of people with IBD. Approximately 30,000 Americans, mostly young men, have PSC and 70 percent of those patients also have IBD. PSC occurs when bile ducts become inflamed, scarred, narrowed and sometimes even blocked. This causes bile to build up in the liver. The disease is notoriously difficult to treat — currently, no medications are effective against it and it often progresses to liver failure, which is only treatable with a liver transplant. Patients are also at increased risk for colon cancer.
With a transformative $20.2 million gift from Frank and Barbara Resnek, the Brigham recently launched the Resnek Family Center for Primary Sclerosing Cholangitis Research, the first research center of its kind in the nation. Under Korzenik’s leadership, the center is assembling a team of multidisciplinary experts to study PSC and related disorders such as ulcerative colitis to pursue new tests and therapies for the disease and articulate its cause and why it progresses. Thanks to the Resneks’ gift, Korzenik and his collaborative team are pursuing the causes of PSC, studying the role of genes, microbiota, environmental triggers and the immune system, and working to develop and test new drugs that will stop PSC from progressing.
“With this gift, we’ve been able to bring together experts at the Brigham, in Boston and around the world who are potential collaborators in the pursuit of new therapies,” said Korzenik.
Big Questions, New Opportunities
Several investigations are already underway. In the SHIP (Sulfasalazine Hidden in Plain Sight) study, a randomized, double-blinded, placebo-controlled trial, investigators are evaluating sulfasalazine—an FDA-approved medication for arthritis and colitis—as a treatment for PSC. The study should be completed in 2021.
A second study is evaluating the impact of dietary changes on PSC, comparing a vegan diet to a highly specified low-carbohydrate diet. Preliminary evidence suggests that both diets could benefit patients with PSC in different ways. This small, pilot study may provide new insights into the role of diet in PSC.
The center’s other areas of focus include uncovering better biomarkers that can guide drug development and determine which interventions tested in clinical trials may be most effective. Efforts are also underway to understand what initiates and perpetuates inflammation. Finally, the team is leveraging cutting-edge technologies to fully catalog the proteins, metabolites and other players involved in PSC and IBD to begin understanding the connections among these interrelated diseases.
The team is also very interested in exploring the role of hydrogen sulfite in these conditions. Korzenik is eager to collaborate with the Brigham community on this front or other avenues of investigation.
“We have an incredible opportunity to begin to understand these diseases in entirely new ways,” said Korzenik. “While we now have more ways to pursue our goal, our focus remains singular: to develop new and effective treatments to improve the lives of our patients.”