A Duke rheumatologist who has specialized in scleroderma for the past five years has launched a clinic dedicated exclusively to the disease and its multiple presentations.

Ankoor Shah, MD, says his goal is to create North Carolina’s only center-of-excellence for scleroderma treatment and research, modeling his approach on a Duke rheumatology clinic that focuses on pregnant women with autoimmune disease as well as the Duke Lupus Clinic

Based in the Duke Division of Rheumatology and Immunology, the weekly clinic will allow patients to see different providers on the same day, an option designed to create a more convenient experience for patients.

“My goal since the beginning of this practice has been to create a distinctive treatment environment that gives patients a chance to see specialists who understand the disease and its complex manifestations in many organ systems,” Shah says. “The purpose of a center of excellence for scleroderma is to provide high level, individualized care at a time when few academic centers offer these services.”

Shah began focusing on scleroderma in 2014 and has increased the number of patients annually while creating the first disease registry in the state. Regional rheumatology practices frequently refer patients to Shah because of the specialization and the presence of multidisciplinary experts who can treat challenging manifestations of the condition, particularly those involving the gastrointestinal tract, lungs, or cardiovascular system.

The incidence of systemic sclerosis in the United States stands at approximately 20 cases per million, and the disease presents therapeutic challenges. “Because it is distinguished by a multi-system presentation, it’s critical to bring together specialists who understand the presentations, the complications and the most effective therapies,” Shah says.

As the clinic grows, Shah wants to expand the disease registry by linking several single-center scleroderma registries to broaden the impact of shared research in a field with limited drug options. “We would like to develop a biobank that will allow the collection of biopsies and biological samples to facilitate translational research,” Shah says. “There is a huge need for new disease-modifying therapies for scleroderma.”

Shah cites encouraging results from bone-marrow transplants performed by Keith Sullivan, MD, a Duke rheumatologist and specialist in cellular therapy. The results of a study utilizing Sullivan’s aggressive stem cell transplantation regimen was published in the New England Journal of Medicine in January 2018.