Laying the Groundwork for Equity in Sarcoidosis Outcomes

By Betsy Piland
October 3, 2025 | VOLUME 3, ISSUE 3

At New York City’s Bellevue Hospital, where many patients face the dual challenges of complex disease and socioeconomic vulnerability, Kerry Hena, MD, sees the disparities of sarcoidosis firsthand. With a CHEST grant, she is building the infrastructure to study how sarcoidosis presents across populations, with the goal of making equity a standard part of diagnosis and treatment.

The seed of an idea

Dr. Hena’s interest in sarcoidosis began during her fellowship and grew while working at Bellevue, one of New York City’s largest public hospitals. There, she saw firsthand the stark differences in outcomes between patients in public vs private institutions. For her, this disparity was impossible to ignore.

“Some of our Black patients are at high risk for comorbid conditions and severity of disease,” she explained. “They are at risk for multiorgan involvement, progressive pulmonary disease, pulmonary hypertension, [and] early mortality from the disease.”

This awareness inspired her to design a study that would explore sarcoidosis phenotypes—such as advanced pulmonary disease or extrapulmonary involvement—and how those phenotypes correlate with demographics like race, sex, and income level. The working hypothesis: Disease presentation is not uniform, and demographic factors matter. By shedding light on these patterns, clinicians may be able to detect disease earlier and intervene before irreversible damage occurs.

Building the foundation for research

When the CHEST grant was announced, Dr. Hena and her sarcoidosis work group—comprised of attendings in dermatology, cardiology, neurology, and pulmonary medicine—saw an opportunity. Unlike more common conditions, sarcoidosis research lacked infrastructure and support.

“We realized we really [needed] to create a REDCap [Research Electronic Data Capture] database, and we needed help,” she said. “We didn’t have that research support that other disease entities do because sarcoidosis is a relatively rare condition compared to other disease entities. We wanted to fill a void that we were unable to fill without funding.”

Upon being awarded the CHEST grant in 2022, Dr. Hena was able to onboard a research coordinator, build the database, and begin enrolling patients. To date, 176 patients have been added, with 172 from NYU Langone and four from Bellevue. While the disparity in numbers highlights ongoing challenges in recruiting patients who are vulnerable—many of whom are hesitant to consent due to historical inequities in research—it also underscores the importance of the study itself.

Early findings and expanding impact

With data collection underway, Dr. Hena’s team has started analyzing differences in organ involvement and outcomes. To supplement direct enrollment, they are also using a tool to identify additional patients across institutions. This multipronged approach is helping overcome barriers to participation while broadening the data pool.

Dr. Hena’s goal is to identify patients earlier in their disease course. “Particularly with progressive lung involvement, we could capture our patients before they develop pulmonary fibrosis, before they develop pulmonary hypertension; we could create a pathway where we’re able to [achieve] remission of their disease,” she said.

The implications are profound. Earlier identification and treatment could shift outcomes for patients who historically have been at higher risk for severe, remitting disease courses—particularly Black patients with lower socioeconomic status. “We hope to shift that paradigm,” she said.