Dr. Catherine Sims Leads Team Researching Pregnancy and Vasculitis
Pregnancy can be complicated, even for healthy women. But for someone with a rare autoimmune disease, even thinking about having a baby can be overwhelming and isolating.
Vasculitis patients don’t have a large network of people to ask questions about what it means to be pregnant while having a rare disease. Questions like ‘will I be safe?,’ ‘will my baby be safe?,’ ‘once the baby comes, will I be healthy enough to care for my child?’
That’s where Dr. Catherine Sims and her research come in. Her studies, which began in 2020 during her rheumatology fellowship at Duke University, are designed to help answer those questions. Women with vasculitis can read about what others have gone through while trying to get pregnant, during their pregnancies and afterward. The research, which began with the VPREG registry founded by Dr. Megan Clowse and Dr. Peter Merkel, may help take away some of that isolation and fear women with vasculitis might feel.
Expanding Research
She recently decided to expand her research into the patients’ mental and emotional health as well. The team has been revamping the surveys. They want to know how the mental and emotional experience affects outcome and pregnancy experience. 
Eventually she hopes to start an online support group for women who are thinking of getting pregnant and for those who are already pregnant. Women could stay in the support group during pregnancy and a year post-partum to establish connections with other mothers. She wants the support group, led by a Vasculitis Foundation patient partner, to allow patients to connect with and guide each other.
“We have published some of our prior work, which identifies a lack of community for these patients,” she said. “I want a sustained community. That’s my goal for next steps. I want women who feel isolated to find each other and connect.”
The data Dr. Sims and her team have been collecting is important to everyone who is pregnant or thinking about becoming pregnant because it documents the vasculitis journey throughout pregnancy. It’s not an anecdotal story, rather it is data-driven, statistical information. While each story is important, women can get a more comprehensive idea of what to expect.
“We have had over 200 patients, that’s huge for vasculitis, especially pregnant women,” Dr. Sims said. “We want high quality data, so we strive to ensure they are completing all surveys. We have a steady stream of people who enroll.”
Dr. Sims must focus on what the patients can tell her, because getting their medical records for the study proved to be too complicated. Women from around the world participate in VPREG and access to medical records even across state lines has proven to be impossible at times. The registry includes forms in Spanish, Italian, Turkish and Portuguese. The team is moving forward with translations in Chinese and Japanese.
“I print the VPREG publications and Vasculitis Foundation handouts to give to patients during clinic visits so they can hear the experiences of others,” she said. “VPREG is patient reported. I want to focus on what patients can tell me.”
Recruiting Patients
Because Dr. Sims has seen patients drop out of the studies when they are emotionally distressed, she wanted to include those emotional and mental aspects to the study, so more women know what to expect and can prepare for the challenges they might face.
“It’s tough to get pregnant patients with chronic conditions to stay in studies since they are so busy,” she said. “We try to be respectful of their feelings and what’s going on with them. Women who lose pregnancies. It becomes traumatic for them.”
That means the team is constantly recruiting patients for their studies. Dr. Sims is going to Vienna this year for an international conference on rheumatology, reproduction and pregnancy, where she will network with rheumatologists and promote her research. She sees the conference as an opportunity to make more providers aware of VPREG and recruit more patients.
“I do as much as I can,” she said. “We are missing people outside of academic centers.”
She tries to make the process as easy as possible, offering forms in various languages and allowing patients to enter their information directly into the computer, using REDCap to collect the data. She works with international colleagues to translate, recruit and intervene.
Every woman who enrolls in the study and fills out the surveys has access to the website and can view the study. The team that tracks the research meets every couple of weeks to talk through what they are seeing in the data. The surveys are due every trimester during pregnancy and postpartum.
They recently published two papers in the Journal of Rheumatology, which Dr. Sims hands out to her patients. The articles are titled “Exploring Reproductive Experiences with Women Enrolled in the International Vasculitis Pregnancy Registry,” which was released in June 2024, and “Reproductive Outcomes for Women With Vasculitis,” released in July 2024.
