IJMSC Author Spotlight: Vivian Chen, MD, and Suma Shah, MD

Authors Vivian Chen, MD, and Suma Shah, MD, have published 2 papers with the International Journal of Multiple Sclerosis Care (IJMSC) this year. The first, along with first Kristen Veal, MD, arose out of Shah's fellowship year. An Updated Assessment of Patient Knowledge in Pregnancy and Multiple Sclerosis served as a needs assessment to understand the level of patient family planning and pregnancy knowledge within the Duke Comprehensive MS Center. The follow-up paper, Navigating the Unknown: A Qualitative Exploration of the Lived Experiences of People With Multiple Sclerosis During Pregnancy, turned a qualitative lens onto patient experiences with family planning and pregnancy.

Chen is a first-year neurology resident at the Hospital of the University of Pennsylvania. She completed both her medical and undergraduate training at Duke University where she met Dr Shah, an associate professor of neurology at Duke University School of Medicine. She joined the faculty in 2018 after completing medical school at Upstate Medical University in Syracuse, NY, Neurology residency at Duke, and a fellowship in MS/Neuroimmunology at Duke. Dr Shah cares for MS patients both at Duke Health and the Durham VA Hospital.

Authors Chen and Shah recently sat down with IJMSC to talk about these papers, their career paths, and their continuing research.

International Journal of Multiple Sclerosis Care (IJMSC): Tell us the story of the 2 papers you published in IJMSC this year. Pregnancy and multiple sclerosis [MS] is a 2025 hot topic.

Suma Shah, MD (SS): These papers came about when I was a fellow in 2017, 2018. The inspiration of my passion for pursuing this specific topic was several patients whom I met over the course of my year of clinical fellowship. They were navigating decisions about growing their families and trying to consider the impact of living with a chronic illness and how it might affect them as a future mother as well as the impacts of their disease-modifying therapies [DMTs] during pregnancy and postpartum. There were just so many unknowns when the first paper came about. I think as [clinicians in] academic centers, we often pride ourselves on being these gems of multidisciplinary care. We create this tight-knit community to collaborate and provide education in a robust form to our patients. And so the goal of that first paper was to serve as a needs assessment, to get a sense of where our patients who are receiving care in an academic medical center are, what they know, what they’ve experienced, what their journeys were when it came to considering motherhood and growing their families. I created the survey, and it was rolled out over the course of a few years with myself and a few of our subsequent fellows. [We wanted] to capture the current era of patients living with MS with our current high-efficacy therapies and [clinicians] trying to be up to date on what we share with our patients. It was eye-opening. I remember sharing that initial study about 3 years ago now at the CMSC [Consortium of Multiple Sclerosis Centers] Annual Meeting, and it was met with such great interaction between colleagues from all different disciplines, saying, “This is a little surprising. We’ve been trying to fight the fight of ensuring our patients feel empowered about making these decisions.” Even at our academic medical center, it was humbling to see that there was still a lot of room to grow. Then Vivian and I met and thought through research projects, and that’s where this next iteration came from.

"I remember sharing that initial study about 3 years ago now at the CMSC Annual Meeting, and it was met with such great interaction between colleagues from all different disciplines, saying, 'This is a little surprising. We’ve been trying to fight the fight of ensuring our patients feel empowered about making these decisions.' Even at our academic medical center, it was humbling to see that there was still a lot of room to grow." ~SS

Vivian Chen, MD (VC): At the time that I met Dr Shah, I was a medical student going through my clerkships, and I knew I was interested in neurology and neurologic disease and clinical research, but I also shared with her this growing interest in women’s health and reproductive health. Lucky for me, I didn’t know that was not only a shared interest but an area of specialization for her. We came together because of these overlapping interests. Building on this prior work, specifically that conducted by her and Dr Veal, we were able to think more about these gaps in patient understanding and persistent misconceptions regarding pregnancy and MS management. How can we give voice to some of these existing gaps and patient lived experiences to help [discover] where there might be resource needs? And that’s the lens that we took for the subsequent paper.... Several [patients] from the clinic were very gracious with their time, talking [with me] about what it means to be a patient and a person living with MS and how we can do better as a system to support their needs. [They] also shed light on a lot of things that I [had] not realized…. One of them that we highlight is this uncertainty and the unknown aspects of the experience [of family planning] that go beyond relapse risk and are quite nuanced in terms of the types of uncertainty.

IJMSC: Dr Shah mentioned that she was surprised at the base level of where patient understanding was. Dr Chen, what was something that was unexpected for you?

VC: I had quite a few patients tell me that they had been told by neurologists or others that it’s not safe for them to plan a pregnancy while living with MS. We are fortunate enough to work at these large subspecialty clinics and these centers of academic excellence, and even in this setting, there are people who still believe that there are limitations in terms of family planning.... I had one patient specifically tell me that it wasn’t until she met Dr Shah and they did some more peripartum counseling about her risks, about safety and DMTs, [that she knew she could consider conceiving]…. Two decades ago, women were told that [pregnancy] was not safe due to having MS and the risk of relapses and possible disability associated with the disease. Pregnancy may not have been a good idea back then, but at this point, the current literature supports that it is generally safe for people who are considering pregnancies to plan so [that they have] the right DMTs and the right counseling and the right care. One of the people whom I talked to, she almost [didn’t get to pursue] her dream of having a family because she didn’t have proper access to information. It was eye-opening to see how much of a change could be effected just through patient education, staying up to date on what the current literature is, and also…talking to colleagues. This is definitely a growing field, where the research not only shows that there are patient gaps in knowledge but also, understandably, a provider gap too. If you’re not somebody who interfaces a lot with patients who might be considering family planning or reproductive health, that might not be something that you think a lot about and you may not be comfortable counseling patients [about it]. I think giving voice to some of these experiences, like…the patient who almost gave up on her dream of having a family or another one saying that living with MS in the postpartum period, where your risk of relapses is higher, was like a ticking clock—I think those types of metaphors really shed light on the experiences [of these people].

"I think giving voice to some of these experiences, like…the patient who almost gave up on her dream of having a family or another one saying that living with MS in the postpartum period, where your risk of relapses is higher, was like a ticking clock, I think those types of metaphors really shed light on the experiences [of these women]." ~VC

IJMSC: I interviewed Esther Bui, [MD]; and Riley Bove, [MD], last year, and this is one of the topics that we talked about. Dr Bove, in particular, was very frustrated, expressed great frustration that she had been working and distributing and advocating for this information to reach from the centers that are doing the research into clinical practice. She was really feeling the pressure after, like you said, Dr Chen, about 2 decades, and there are still people who are counseled…not to become pregnant and grow a family if they have MS. Are there other opportunities for this information to be more common knowledge? How do we reach all the neurologists and all the people who are practicing across the United States and across the world?

VC: In our work, we acknowledge those same issues that you discussed with Dr Bui and Dr Bove. There is this barrier to accessing information that is impacted by someone’s level of access to resources…. We tried to address that a bit in the survey-based assessment that we did. We discussed next steps, and one of them would be some sort of patient-facing educational tool or website to try to address commonly asked questions regarding timing of DMTs, pregnancy, lactation, symptoms, and mental health.... And so we did it; pregms.duke.edu is up and running, and it was our attempt at trying to begin…bridging this gap in terms of patient understanding. But I think there are a lot of next steps in terms of getting this information out and into people’s hands….

SS: The piece I’ll add is that it is very much this. It’s showing up; asking the right questions; advocating for our patients; being there at the national level, at the subspecialty-specific meetings; and taking that back locally and regionally. I think that requires a lot of effort. I can completely sympathize with the frustration that has been previously shared, but I also very much see the explosion of knowledge that is required in our field, the therapies that are changing. There are clinical trials constantly coming down the pipeline. There are new risks associated with medications that have been prescribed for over a decade. People have to keep up to date with [all of it]. The task that we are charged with in multidisciplinary care is ensuring that we build teams that know where to look for answers if the questions cannot be readily answered in the clinic. I think that’s where the website that Dr Chen and her team created [comes in], as well as continued collaboration.

I’ll also give a shoutout to Dr Bove. She’s created this neuro ring of researchers, collaborators who meet…once a month and share our knowledge, collaborate on research ideas, and then bring it back to where we are, both nationally and internationally. I think [that’s how] we can continue to shout it from the rooftops, ensure that it stays relevant, and educate those around us as the practice of MS care changes.

IJMSC: That’s what I love about doing these interviews, finding out about the new things that are available and the things that I can share. We already spoke [with] both of you a little bit about this, but how did you both get involved in MS research?

VC: I am at the beginning of my neurology career. I think that this research [experience] definitely makes me motivated to continue in MS/neuroimmunology but also to stay connected to women’s neurology in some way. Working with Dr Shah…I could not think of a more fitting project to have been exposed to as a medical student trainee. She’s doing wonderful work with others to continue to shed light on and explore not only MS but NMO [neuromyelitis optica] and MOGAD [myelin oligodendrocyte glycoprotein antibody-associated disease] and the patients [with those diseases]. Their experience is even more understudied….

IJMSC: Dr Shah, how did you find your way to neurology and MS research?

SS: I am the only physician in my family, so it was a lot of figuring out…the right path for me. I found a really good mentor. On the other side of this wall is my fellowship director, Dr [Mark B.] Skeen. He embodies what it is to be a mentor and a sponsor. A lot of the opportunities I’ve been afforded in running clinical trials and participating in committees have come from him…saying, “Hey, I think I think Suma would be very good at this.” And that is what brought me into the MS world…. In 2016, [he sent out an email saying], “We haven’t had anyone go into MS care in a while at Duke.” I was a resident, and as the story goes, I was the only one who responded and spent some time with him. I was inspired [because] he had the kind of relationship that I [was] looking for with my patients long term. So it was very much the clinical care that pulled me in, and the research, as you heard, came second while I was in fellowship.

IJMSC: Can we talk a little bit about the mentor-mentee relationship? Is it just happenstance? Is it running into the right people at the right time? Dr Chen, maybe you could speak a little bit about your experience finding Dr Shah?

VC: I can only emphasize what Dr Shah said about the importance of incredible mentors. I met Dr Shah early on in medical school, actually as a first-year. She’s very involved in medical education and was giving lectures. I had one of those moments and I said "I think that this is somebody whom I would really like to emulate in terms of passion for clinical care, education, and research." And there were some early interactions that affirmed [that feeling]. Rotating through the different specialties as a clerkship student, I knew that I was driven not so much by a specific question at the time but more just the type of people, the type of environment I wanted…. I reached out, and I think that’s something that I’ve learned through this process: You never know what can come of putting your foot forward and reaching out and asking. “I’m interested in your work, and I’m interested in working together.” The projects that we worked on regarding women’s health and MS really came out of our working relationship being really collaborative and feeling comfortable to actually express, “This is where my interest might be leading me, and it might be different than what I initially thought,” and her being very receptive and supportive. That’s how we got to today…. I said, “Hey, I am interested in this topic of women’s health, and I would really love to see where that goes.” And…that opened up a whole new door of realizing that this is somebody who also shared this interest. I can only say that good mentors have a lifelong impact, and there are very few people who have had the degree of impact that Dr Shah has had on me and my career.

"You never know what can come of putting your foot forward and reaching out and asking. 'I’m interested in your work, and I’m interested in working together.'" ~VC

IJMSC: That’s a wonderful story. Dr Shah, [you’re] a little bit further on in your career. Are you still finding or still seeking those relationships and finding an openness to exploring new research, new ways of doing things?

SS: Absolutely. I think what served me well is sort of the converse of Dr Chen’s conversations. Where I thrive is seeing mentees succeed, and that means having a more open approach to what that mentorship may look like. I’ve had several third-year students in the medical school who have worked with me in research capacities, but the mentor-mentee relationship doesn’t always necessarily come out of that. Sometimes it is very much, I don’t want to reduce it too much, transactional…. I think there are [people], such as Dr Chen, who really ensure that they are…reflecting on what their needs are and then opening those doors to see what’s possible…. We had a completely different [research] idea in mind when we first started speaking, and when she asked, “Hey, what do you think about women’s health?”, my eyes lit up. I remember sitting here and saying, “I’m really interested in that. I would love to work with you.” And it paved the way for so much energy in our interactions. We found something that we were both passionate about…. You can probably hear it in my story, as I very much find that I’m fueled by mentor-mentee relationships, and apparently I’m midcareer now, although I’m in my eighth year as faculty, and in this career stage, it’s become something that I [use] to reinvigorate myself, to say I should be looking forward, to say what’s next for me, so that I can continue to have [the] dynamic mentorship that I offer to mentees.

IJMSC: Back to the papers. What's next? Is there a third paper in this series?

SS: There are many…. Last year in the Third Year Research Program at Duke, I worked with an intrepid student who looked at this question…to help identify gaps in treatment of patients who have other demyelinating conditions such as neuromyelitis optica [spectrum disorder] and MOGAD. There is a dearth of literature out there, particularly because one of them was just described in the last 8 years: MOGAD. There’s a lot of room to continue to assess where we stand, assess what can and can’t be done safely, collaborate with other institutions. I think that was one of the more tremendous, arduous lifts that I’ve done research-wise: We created a collaborative of southeastern academic centers, from Vanderbilt to Georgetown to Emory and [the University of North Carolina], and asked them for input, because in the rare disease space, we’re looking at much smaller numbers in our institution. That was a considerable undertaking, but it has now led to a manuscript as well as a CMSC Foundation scholarship that was awarded to the student I worked with last year. So part 1 is to start looking into the other demyelinating diseases that may have a paucity of numbers. And then this field really informs how I choose a lot of the trials that I lead, and so I’m working with industry-sponsored trials to look at breast milk analysis….to ask, “What is this disease-modifying therapy going to mean for breastfeeding and postpartum?” Finally, a current MS fellow and I are working on a contemporary cohort of outcomes for patients who have remained on disease-modifying therapies of various kinds through pregnancy, so we can report our institutional practices and how they’re doing. Short answer: They’re doing really well, and we want to be able to share that.

"...a current MS fellow and I are working on a contemporary cohort of outcomes for patients who have remained on disease-modifying therapies of various kinds through pregnancy, so we can report our institutional practices and how they’re doing. Short answer: They’re doing really well, and we want to be able to share that." ~SS

IJMSC: Dr Chen, what are you doing right now?

VC: I am pursuing my residency training. The beauty of this interconnected world that we live in now is that Dr Shah and I can continue to collaborate and work on a project together, but I really am dedicating my next 4 years to neurology residency training, and I’m very excited about that. I’m excited to gain more experience in terms of the clinical aspects of care, which I think, as Dr Shah said, is the driving force for most people who are interested in this type of work: being motivated by clinically seeing the impact of our research on patients. Part of that is sitting behind a desk, thinking and collaborating, but most of that actually happens in hospitals and clinics and talking to patients.

IJMSC: One of the pillars of IJMSC and CMSC is multidisciplinary care, which you’ve both already talked a little bit about. Can you reflect a little bit more on how research and clinical care meet? How has the multidisciplinary model contributed to your paths?

SS: I’ve been fortunate to work at the academic center here, and we’ve long had an MS nurse, infusion coordinator, a clinical pharmacist, [physical therapist], and then our clinician team made up of advanced practice providers as well as physicians, and that has always been how I’ve known MS care. What has been very rewarding in pursuing this line of research is that I have been allowed the opportunity to emerge as the local expert in the communities that each of our team members has within the MS cohort. Just this Thursday, I’m speaking to all of the clinical pharmacists at Duke about disease-modifying therapies and pregnancy as a clinician who can inform and color how they think through some of the available data and some of the lack of black and white that exists in our world. I do think that both CMSC and IJMSC, as well as my clinical practice, have frequently reflected the need for these conversations to not happen in silos, in a room just between a clinician and the patient. It [needs to be] at every touchpoint within the medical care system so that there is a cohesive message that’s being sent and not an additional uncertainty that we’re putting upon our patients…. I think the true multidisciplinary discourse we do in women’s health and pregnancy has been set up so well for myself here that I would love to continue to bring that conversation to our meetings and to our discussion tables.

VC: Just to echo that, I’ve seen the passion that comes through when I attended CMSC. One of the really wonderful things about being able to share our findings through this journal is that [the audience spans] clinicians to physical therapists to pharmacists to trainees and others who really share this interest in MS care and neuroimmunology. I think without that, a lot of the really good ideas and projects would not be possible. Our website was one example of that. We worked with 2 really wonderful [students] who were able to provide great insights and the technical skills that allowed us to build this resource that I think would have been, honestly, a monumental lift for me. I think that research helps to drive practical change, and that’s where it meets multidisciplinary care. Research provides the building blocks and foundational knowledge and identifies gaps in treatment care. And then multidisciplinary care can help bring that to a practical intervention or therapies or things that can actually help patients.

"...research helps to drive practical change, and that’s where it meets multidisciplinary care. Research provides the building blocks and foundational knowledge and identifies gaps in treatment care, and then multidisciplinary care can help bring that to a practical intervention or therapies or things that can actually help patients." ~VC

IJMSC: An IJMSC focus for the last quarter of 2025 is AI in MS clinical care and research. What are your experiences with AI, and how do you think it will affect the field?

SS: : I think there’s great potential. The truth of the matter is there’s too much to know, and there’s a lot of us doing really good work, and [we need to find ways] to keep up. I just got my weekly digest for MS updates from PubMed, and I’ve got my weekly digest for women’s health topics, and there’s no way I can keep up on reading all of those. I scroll through the titles. I try to ensure that I’m keeping up with topics that are relevant and interesting to me. I think what AI offers is the ability to help simplify that somewhat. From a research topic standpoint, it is a wonderful [first] step to try to assess what’s out there, to get a sense of where the needs may be, where the current gaps may be, so that people can better spend their time, ensuring what they pursue with rigor has a place to land and may have an impact on changing practices. There’s tremendous potential.

I do have my hesitations, which is probably what you’re hearing too. I’m a bit of a purist. I like to stand by the projects we have done from start to finish, to get those primary data, to feel that I can trust the process from the methods to the analysis and have my hand in it in some way, shape, or form. I think probably the right answer is somewhere in between…. I also think it’s great for our colleagues, who may be resource limited or time limited from coming to conferences and having meaningful discussions, to ask [AI], “What do we know right now in 2025 about this topic?”

VC: AI is taking the world by storm, and I believe rightfully so…. Ultimately, I agree that it’s meant to be a tool to help with efficiency, speed, thoroughness, whether it comes to research or clinical care. From a research standpoint, it probably allows access to skills, data cleaning, data analysis, and things that might not otherwise be possible or accessible to some people, and that makes it helpful in terms of accelerating scientific advances. Clinically, I’ve seen a lot more preceptors, colleagues using AI in the electronic health record, especially when it comes to documentation, which I know people feel mixed about. I think that there is some potential there in terms of allowing clinicians to spend more time with patients. And maybe, as we keep alluding to, all of this really hinges upon the patient-clinician relationship. A lot of education happens in those moments where there’s time to talk, and there are a lot of limitations on clinician resources, including their time. So I think one of the best ways to use AI is to allow people to focus more on human interaction. In addition to that, there are some newer use cases [using] AI to improve health literacy, taking documents or health-related information and making them more patient centered and patient facing. I think that’s also a really great use.

Be sure to keep an eye out as we continue to spotlight other IJMSC authors this fall!