The Team

Nearly all of them worked from home. One of the greatest challenges, Anand explains, came from an overall positive: They had almost too much data coming at them too fast. “We just really had to work hard to interpret it and present it in a rigorous manner,” she says. “And our team was really holding itself to a high standard to do that well.”

As the principal biostatistician of the group, Montez-Rath both planned and designed the data analysis, working “many hours” on the “very intense” project. She adds, “In a pandemic, all data becomes outdated very quickly and new knowledge is created at a very fast pace, which makes it even harder to maintain high-quality work. Given that all my other projects didn’t stop when the pandemic started, it resulted in many more hours of work (including nights and weekends) beyond what I would normally do.”

Still, she remembers the work fondly. “I immediately realized that the project was going to have a really high impact,” she says. Her enthusiasm for her work kept her going. As she explains, “I have my dream job: working closely with people in various projects that ideally have an impact on people. I feel that what I do is useful to patients and to the betterment of the world.”

Han, a biostatistician hired at Stanford in 2018, echoes Montez-Rath’s passion for meaningful work: “It’s always interested me that my work could improve people’s quality of life,” he says. He heard about the project in June 2020, when Montez-Rath realized there was too much statistical work to do all by herself. He describes the hectic pace of the process this way: “We met frequently to summarize the research questions and the analysis plan. It all came really fast, especially since at that time there was no report about national seroprevalence at all. The idea was if we want to do this, we have to do it fast.”

And he means fast—some days he met the team at 7 a.m. to discuss a problem and then again at 5 p.m. that same day to track the progress. He describes the work as “really intense and time sensitive,” but adds, “We understood the importance of this study, so we wanted to do the best we could.” His role included data preparation, data mining, data analysis, and output generation.

Parsonnet was brought on board for her epidemiological expertise, giving opinions on study design and meeting regularly with the team to “discuss what the data showed and go over it and review what it meant and how we interpreted it, given the world around us.” It was her first collaboration with this team and she found it to be “just such a pleasure.”

A Special Clinic

There is a unique multidisciplinary clinic every Monday afternoon in Redwood City that focuses on the dermatologic and immunologic aspects of systemic sclerosis. Professor of dermatology David Fiorentino, MD, PhD, helped found the clinic close to 20 years ago because, as he says, “I saw a huge gap in the care of some patients if different doctors weren’t communicating in real time regarding patient care.”

Having patients seen simultaneously by both a dermatologist and a rheumatologist solved that, and the clinic is so successful, says Fiorentino, that “access is a big problem. We’re always scheduling a minimum of three to four months in advance. That is literally our biggest challenge, and it has been almost since the beginning of the clinic.”

The process that patients follow when they attend this clinic is unusual in several ways. For one thing, says Fiorentino, “we don’t see anyone in the clinic whose medical information has not been personally reviewed by either Dr. Chung or me or both. Patients carry around misdiagnoses of rheumatic diseases quite commonly, and clinic appointments are so precious that we need to make sure the appropriate patients are seen in our clinic.”

When patients arrive, they are assigned to a room where their vital signs are recorded and their medications are reconciled. They also change into a gown, which is unusual for rheumatology patients but not for dermatology patients because the skin needs to be examined. Then they are seen by a rheumatology fellow and a dermatology resident together, who go over the history, followed by targeted physical exams. The rheumatology fellow does a general medical examination with a focus on the joints and muscles. The dermatology resident assesses the skin to see how tight it is and to look for other specific skin markers of scleroderma.

After the trainees report their findings to Chung and Fiorentino and they come up with a reasonable plan, all four physicians go into the patient’s room, where, Fiorentino says, “we confirm important parts of the history with the patient, briefly examine the skin, and point out to trainees any unusual findings that might be helpful either diagnostically or prognostically. Patients often have a list of questions, as they’ve waited three or four months, and they’ve often traveled very far for the appointment.”

“At the end of the visit,” Fiorentino says, “Dr. Chung and I always bring up that we do research in the disease. We explain why it’s important to study actual patients and that complex rheumatic diseases are poorly modeled in the laboratory. We stress how rare their disease is and that this is an opportunity to turn the pain and suffering of their disease into something profoundly important and positive. When the patients better understand this perspective, 95% of them agree to be part of our research cohort and donate tissue.”

Motivated by Firsthand Experience

While in the midst of her postdoctoral work in Majeti’s lab, Zhang’s life took a dramatic turn when she learned that Isaac, her 4-month-old son, had spinal muscular atrophy (SMA) type 1 (also called Werdnig-Hoffmann disease). Children with SMA type 1, which is characterized by muscle weakness, are not expected to survive past early childhood.

“Obviously that was devastating,” Zhang says after a heavy sigh.

“People with the best of intentions gave me a lot of advice. Most said I should stop working and take care of my 2-year-old daughter and my sick baby, but I took a different track and immersed myself in my work.”

Zhang questioned whether that was a coping mechanism, but she believes it was more likely something else.