Title: The Future of Autoimmune Research with Victoria Shanmugam, Director of The Office of Autoimmune Disease Research (Ep 089)

Mickey: Autoimmune disease affects an estimated fifty million Americans. That is more people than are living with cancer, heart disease, and many other major health conditions combined. And yet for decades, autoimmune diseases have often existed in the shadows of medical research. Patients have faced long diagnostic delays, limited treatment options, and too often the feeling that their condition wasn’t fully understood.

But that landscape is beginning to change. In recent years, we’ve seen growing recognition that autoimmune diseases represent a major public health challenge. New research initiatives are emerging, large-scale collaborations are bringing scientists together across specialties, and as of 2023, the National Institutes of Health has a dedicated Office of Autoimmune Disease Research focused on coordinating and accelerating progress across the entire autoimmune disease spectrum.

Today, we’re talking with the person leading that effort. Dr. Victoria Shanmugam serves as Director of the Office of Autoimmune Disease Research within the NIH Office of Research on Women’s Health. She’s a physician scientist, rheumatologist, and a recognized leader in autoimmune disease research. In this conversation, we’ll explore why the office was created, what it’s working on, where the most exciting areas of research are emerging, and what all of this could mean for people living with autoimmune disease in the years ahead.

Welcome back to the Autoimmune Wellness Podcast. I’m your host, Mickey Trescott, and today I’m honored to be joined by Dr. Victoria Shanmugam, director of the Office of Autoimmune Disease Research at the National Institutes of Health.

[00:01:41] Introducing Victoria Shanmugam, MBBS, MRCP, FACR, CCD

Mickey (2): Dr. Shanmugam is a physician-scientist, rheumatologist, and a leader in autoimmune disease research. She earned her degree in physiology from Oxford University and her medical degree from Imperial College School of Medicine in London, graduating with honors in medicine.

She completed her internal medicine residency and rheumatology fellowship at Georgetown University, where she later joined the faculty and built a distinguished career caring for patients with complex autoimmune diseases while also leading research and medical education initiatives.

Throughout her career, Dr. Shanmugam has been deeply involved in advancing our understanding of autoimmune and rheumatic diseases. Prior to joining the NIH, she served in a number of leadership roles in academic medicine and is widely recognized for her work in systemic sclerosis, vasculitis, and other autoimmune conditions, as well as for her commitment to improving patient care and accelerating research.

Today, she leads the Office of Autoimmune Disease Research, which was established to strengthen coordination across the NIH and help advance research efforts spanning the many different autoimmune diseases that affect millions of people. I’m so excited to learn more about the work happening behind the scenes, the opportunities that lie ahead, and how patients can better understand the evolving landscape of autoimmune disease research.

Before we begin, a quick reminder that this podcast is intended for educational and informational purposes only, and is not a substitute for medical advice, diagnosis, or treatment. Always consult your healthcare team regarding any medical questions or decisions.

And with that introduction, let’s welcome Dr. Victoria Shanmugam to the podcast.

Victoria Shanmugam: Oh, thank you, Mickey. That’s such a great introduction, and I’m really delighted to join you on the show today.

Mickey: Awesome. Well, let’s just jump right in.

[00:03:29] About the Office of Autoimmune Disease Research

Mickey: Can you share a bit about your role and what the Office of Autoimmune Disease Research is and why it was created in the first place?

Victoria Shanmugam: Absolutely. So I am the director of the Office of Autoimmune Disease Research, also fondly known as OADR at the NIH. The office, as you mentioned, is quite young. It was formed at the direction of Congress in the Consolidated Appropriations Act in 2023. And it was tasked with six specific directives: to coordinate the development of an NIH-wide strategic plan for autoimmune disease research, to identify emerging areas of innovation and research opportunities, to coordinate and foster collaborative research across the NIH, to annually do an evaluation of the NIH autoimmune disease research portfolio, to provide resources to support planning, collaboration, and innovation, and to develop some form of publicly available, centralized repository for autoimmune disease research.

And we can talk a little bit more about that as we get deeper into the podcast. But those six directives, along with some of the findings of a National Academies of Sciences, Engineering and Medicine report, looking at enhancing NIH research on autoimmune disease, were what really guided the establishment of the office and are foundational to the work that we’re doing today.

Mickey: Awesome. Well, thank you for that, and I’m sure everybody’s really interested to know kind of where this work came from.

[00:04:58] What Has Contributed to Interest in Autoimmune Research

Mickey: Autoimmune disease affects so many people, yet historically it hasn’t always been a central focus of research. I’d love to know from your perspective what has contributed to that and what do you see changing now?

Victoria Shanmugam: Yeah. So there are, as you mentioned in the intro, about 50 million Americans estimated to be living with autoimmune disease, and the rates are increasing. We don’t exactly know why, but we also are struggling to know the exact prevalence of many autoimmune diseases because we don’t have good comprehensive longitudinal data sets.

When we take together all of the autoimmune diseases, as you mentioned, this is one of the most common groups of chronic conditions affecting the American people. But we don’t have a good coordinated structure for studying them. These diseases are quite often systemic, and when we look at the body as a whole, we recognize that autoimmune disease research really intersects with every organ and system in the body and therefore intersects with the mission of every single institute and center at the NIH.

So a coordinated approach is really essential. I’m excited to tell your listeners that in July of 2025, we published the first ever NIH-wide strategic plan for autoimmune disease research. And and that’s really giving us a guiding framework and a roadmap for how to approach the scientific priorities over the next five years.

We identify in that plan some specific priorities, objectives, and cross-cutting themes that the NIH thinks are important to focus on. And within those priorities, there is an objective to expand autoimmune disease research focused on the many autoimmune diseases that co-occur with each other, as well as the comorbid conditions that co-occur alongside autoimmune diseases such as endometriosis, fibromyalgia, often with other autoimmune diseases. And again, the pathogenesis for many of those conditions are, are really unclear.

Mickey: Wonderful. Yeah, as somebody who is a representative of the three autoimmune diseases club, I’m really excited to hear about that, and I know a lot of our listeners are very curious about those conditions that seem to tag along with autoimmune conditions even though they might not be autoimmune themselves. So thank you so much for sharing that.

[00:07:19] The Main Goals of The OADR & Coordination Throughout NIH

Mickey: What are the main goals of the Office of Autoimmune Disease Research, and how is that helping to coordinate efforts across the NIH?

Victoria Shanmugam: Well, the mission of the Office of Autoimmune Disease Research is to support high-priority autoimmune disease research, identify emerging areas of innovation, and really foster collaboration across the NIH institutes and centers or ICs or ICOs, institute centers and offices. As I mentioned, autoimmune disease research really intersects with the work of every single institute and center at NIH. But that means that the research is touched by all the ICs, but really led by none, because it isn’t, kind of owned by any single IC.

The actual largest funder of autoimmune disease research is the National Institute of Diabetes, Digestive, and Kidney Diseases, so NIDDK. In part due to the very large Type I diabetes appropriation, which really had transformative impact on the management of people living with and at risk for Type I diabetes. And what that tells us and has shown us is that with investment, we can really shift the paradigm in understanding, not only diagnosis and treatment, but also, potentially even get to prevention, for these diseases and has been able to get there in Type I diabetes and tells us it’s probably possible in, in many of these other autoimmune diseases too.

Mickey: Wow.

Victoria Shanmugam: As I mentioned, we do all of our work in partnership with the ICs, and the roadmap for that work is the NIH-wide Strategic Plan for Autoimmune Disease Research. If you pull it up online, and I think there’s a link in your show notes, you’ll see there’s five main priorities. We want to accelerate scientific discovery and diagnosis, treatment, prevention, and cure, and we spend a lot of time thinking about that word cure and was it really possible, and we decided we needed to include cure.

To promote research focused on enhancing health for people living with and at risk for autoimmune disease. To support research to understand this full complexity of autoimmune diseases and indeed the complexity across the lifespan as well. To build and maintain capacity for autoimmune disease research. And then, the fifth objective is really a, a critical one, to build and strengthen our partnerships and interdisciplinary collaborations across the autoimmune disease community.

Mickey: I love that. That is all just such an important scope of work that you guys are collaborating on there, and probably pretty overwhelming when you consider all of the single diseases.

[00:09:54] How The OADR Approaches Studying The Vast Range of Autoimmune Diseases

Mickey: And that’s actually the next thing I really wanted to talk about is the challenge in autoimmune disease, really just how many different conditions fall under the umbrella of autoimmune disease.

How does the office approach research across such this vast range of diseases?

Victoria Shanmugam: Yeah, it’s a great question. The autoimmune diseases, as you say, are an incredibly varied group of conditions. They affect every part of the body. Many of them manifest at different points in the life course and some across the life course. There are more than a hundred and forty known autoimmune disease and there may be more that we have not yet defined. And the symptoms obviously vary extensively, based on organs involved and the different diseases involved.

But because the immune system traffics into every organ, we know that autoimmune diseases can affect any system in the body, sometimes many systems simultaneously. And I think what that really calls out to us is that this is an amazing opportunity to really understand the immune system as that missing link. We are approaching things very broadly.

When the office was formed, we convened a coordinating committee for autoimmune disease research, and that committee has really a brain trust of experts from every single institute and center at NIH. And they come together every month to discuss, both what our strategy should be in terms of our approaches, and then also to think about not only what can we do today, but what can we do for the future.

And I think one of the points that we really thought about quite deeply when we were putting together the strategic plan and as we start new strategic initiatives is, not just what the scientists and patients can do today, but what will the patients of 2030 and 2050 wish we’d done today to ensure that autoimmune disease research can really push the boundaries of what’s possible as we move to the future.

We have a fairly modest budget in the Office of Autoimmune Disease Research, but we try to use it really wisely, across and in collaboration with the institutes and centers to support a wide range of research, from fundamental immunologic research, that looks at the mechanisms of autoimmunity and autoimmune disease. We have supported a number of projects investigating preclinical autoimmunity, studies that are focusing on treatments, both improving treatments and then also helping those treatments reach patients across America. And then we also support some infrastructure for autoimmune disease research, as well as some novel public-private partnerships to improve engagement for people living with autoimmune disease in the research continuum.

One of the initiatives that I know you were engaged with, Mickey, in 2025 to 2026 was the NOURISH initiative. This was the Nutrition for Our Immune System Health Autoimmunity Challenge. The beauty of challenge mechanisms are that they have a slightly lower bar of entry in terms of complexity of submitting an application, which means we can make them quite open to our community.

So this was a crowdsourced ideation challenge for our community to submit some ideas on how to better integrate diet and nutrition into autoimmune disease research. We were really excited to see the ideas that came in, and if you didn’t catch the webinar live, I really encourage you to watch the winners’ webinar.

The link is still live on our nourishchallenge.org website. You can watch the video and see the winners talk a little bit about their ideas. But that was something where, you know, we had a unique opportunity, to really bring our community in to this kind of dynamic research paradigm, and work together to come up with some ways to move this field forward.

Mickey: Yeah. I love that, and I love that it sounds like you guys are really looking for the common threads in really trying to help improve the lives of people with all of the scope of autoimmune disease instead of honing in on one or two that affect the most people. So I know the community is really appreciative of that.

And I loved participating in that challenge and hearing about everybody that won. That was just such an inspiring group. So thank you for doing that.

[00:14:07] The Most Promising Areas of Autoimmune Disease Research Happening Now

Mickey: What are some of the most promising areas of autoimmune disease research right now that patients like me should be aware of?

Victoria Shanmugam: Oh, I’m so thrilled that you asked that question ’cause I have so many good things to tell you. So, OADR is small and fairly new, but I’m really pleased that we’ve been able to do some amazing things and support some incredible projects since we started. Back in 2023, one of the inaugural funding opportunities from OADR was a program called the EXACT Plan Network. National research collaborative focused on understanding how environmental exposures shape autoimmune disease risk onset and outcomes.

And the goals of this network were to build a system-level view of how different factors across our lifespan, like chemicals, infections, diet, other exposures, interact with our cells and tissues and organs and place us at risk of multiple autoimmune diseases. There were a number of exploratory and developmental projects supported through this initiative, and they were really designed to help research institutions lay the groundwork for studying this over the longer term, building partnerships, strengthening infrastructure, and trying to develop the scientific capabilities needed to contribute to a kind of larger research mission in this area.

That network is still working together, helping to move beyond studying one autoimmune disease at a time and really integrating understanding of how different environmental factors at different points in our life might trigger and shape disease across the many different autoimmune diseases and across our lifespans.

Another really exciting award that we have been co-funding in conjunction with the National Institute of Allergy Infectious Diseases, or NIAID, is the Autoimmune Centers of Excellence, or ACE program. And the ACE network is a long-standing program of NIAID, but through funding from our office, we were able to bring an additional center online within that group, and that center focuses on autoimmune endocrinopathies, so Type I diabetes, autoimmune thyroid disease, and a number of other endocrine autoimmune diseases.

And that’s really exciting because typically those researchers would not have collaborated with the people studying rheumatoid arthritis and lupus, and other rheumatologic autoimmune diseases, and they typically would not have interacted closely with the basic science immunologists. But by bringing this additional center into the ACE network, it’s really catalyzed opportunities for collaboration, studies looking at the immunologic mechanisms of these diseases, most importantly, across diseases.

So really getting to that point that you made earlier, that you’re one of the people who has multiple autoimmune diseases, this is really common. And as a rheumatologist who used to see patients in the clinic, I have seen this many times, and yet we have not got a great mechanism for studying those co-occurrences of autoimmune disease. And this is a way that we can actually really accelerate the science in that arena.

I wanna tell you also about a couple clinical trials that we’re supporting. That again, is like another place where we can really invest to support accelerating the science. One that we’re particularly excited about is the AVERT study, stand for Atrioventricular Block Elimination by Rosanoliximab Treatment. So that’s a mouthful. But this is looking at a new treatment for women with the SSA antibody or Sjogren’s antibody. We see this both in Sjogren’s disease and then also in lupus, and sometimes in rheumatoid arthritis.

Women who happen to carry this autoantibody are at risk of having a baby that is affected by a condition called congenital heart block. The antibodies from the mother can cross the placenta and cause a problem with the baby’s heart formation. And they very often can develop stillbirth, unfortunately.

So through funding from the Office of Autoimmune Disease Research in conjunction with the National Institute of Arthritis, Musculoskeletal and Skin Diseases, or NIAMS, we’ve been able to support this clinical trial that’s looking at a new monoclonal antibody, given, during the pregnancy, during that critical window when the antibodies can cross the placenta and cause the problem with the baby’s heart formation.

And this therapy, looking very promising, as something that might be able to reduce that antibody burden, and reduce the risk to the baby. This particular study is led by Jill Byon New York University and is really focused on trying to study this in women that are at high risk.

We also have been working to try and support studies that are looking at earlier detection of autoimmune diseases. We’re increasingly recognizing that many autoimmune diseases have this prodromal phase, and I think patients living with autoimmune disease will recollect this in themselves, where there are abnormalities in the immune system, even before the doctors can really detect a definable autoimmune disease. If we could better identify those at highest risk through biomarkers, through autoantibodies, through immune profiling, we potentially could get to a place where we can diagnose disease earlier and hopefully intervene perhaps before progression.

That’s the paradigm that we’ve seen be successful in Type I diabetes, and I think with continued work in this field, then we could potentially see this in other diseases as well. There’s lots of exciting things coming down the pike in autoimmunity, as you probably have been hearing. New monoclonal antibodies, new disease-modifying treatments, some ways to harness the immune system itself, alter the immune responses through chimeric antigen receptor or CAR T-cell therapy and even regulatory T-cell therapies where you engineer the T-cells to kinda dampen down the immune responses. This area of science is evolving really rapidly, and I think shows great hope, both as treatment and potentially as a durable remission for people living with autoimmune disease. We really need to be able to support the studies and the research that must be done.

Mickey: Wow. Yeah, that is, that is so much. The one thing that really stands out to me as somebody who recently in the last year got diagnosed with my third autoimmune condition that I started having symptoms 15 years ago, we all know how long it takes sometimes for your body to really express enough factors in order to get a diagnosis, so I’m particularly excited about that research for early detection and diagnosis and helping people get on their feet faster, right?

So thank you so much for describing all of that.

Victoria Shanmugam: No, it’s so important, and we’re so excited to do the work. So yes, we hear you, and I think you’re not alone. I’ve seen this many times myself in my own clinic, and I hear it, from many patients. So I think it’s really important work.

Mickey: Yeah. Thank you so much.

[00:21:18] Data Platforms & Large-Scale Collaborations

Mickey: So another thing that we’re hearing about are things like data platforms and large scale collaborations. Basically, what do we do with all this information? How are these changing the pace or the direction of the research that’s being done right now?

Victoria Shanmugam: So glad you asked that question. This is something our team and certainly our coordinating committee for autoimmune disease research has been thinking really deeply about. As I mentioned, the six congressional directives that set up the office, number six was this task to develop some form of centralized repository for autoimmune disease research, and we really approached this with a very broad lens. As you and your listeners know, many conditions that we currently group under one diagnosis are likely made up of biologically distinct subtypes. And as we mentioned, people who have one autoimmune disease are at a higher probability of developing other autoimmune diseases. And so really important that we have mechanisms to allow us to look at shared pathways that could contribute to autoimmunity.

We’re at this really pivotal time. There have been these amazing advances in genomics, proteomics, and other molecular tools that are helping us define subgroups of disease more precisely. But we’re also very fortunate because computational power that we have today far exceeds what was possible five years ago, even ten years ago. And we really wanted to bring those two pieces together in a complementary way. So through funding from the Office of Autoimmune Disease Research, we have been collaborating with the National Library of Medicine, or NLM, establish a federated digital data ecosystem. Right now, that’s stood up within the walls of the NIH, within the National Library of Medicine, and we’ve called it the Autoimmune Disease Analysis Platform Testing Space.

That stands for ADAPTS. We picked that name because the immune system adapts, and we were looking for something that could adapt and grow with the science over time. And we know that as we learn more, we’re gonna need to use this ecosystem and this computational platform to do different things, and we thought that was a good kinda metaphor for where we were heading.

The purpose of this platform is to allow researchers to analyze distributed datasets for studying autoimmune disease research. So what we’re wanting to do is help researchers collaborate on these complex analyses that they could not do with a single dataset or they could not do alone. We’re doing this right now within the walls of the NIH simply because we have a structure that allows us to do this and kind of put it through its paces, test it out, so that we can learn, where do we need to invest a little more, what parts work easily, what parts are more complex, to sort of get a little bit of control to the system.

But the beauty of this system is it supports governance and privacy protection by design. You don’t move any data, so the federated model is that the computational power really goes to the data to do the analysis and run the algorithm, but the data stays in place, and there is no kind of exposure of the data to any outside entities.

We hope that with continued investment, that will be something that we can scale more widely, so that we can have something that allows the entire autoimmune disease research community to come together. That will take time, and I think it’s something that we will be kind of, trying to develop over time. But right now, working with this group of intramural investigators to really put this through its paces and test whether or not this is gonna be the right model to use for autoimmune disease research.

Mickey: Oh, that is really impressive, and I’m really excited to hear that you guys are using technology to its fullest potential to help solve some of these problems. So that’s really exciting to hear about.

[00:25:18] How Autoimmune Patients Should Think About Research Progress

Mickey: So my next question is for somebody living with autoimmune disease today, how should they be thinking about progress in research? What does that actually look like from your perspective?

Victoria Shanmugam: Yeah. So research is rarely a straight line. And one of the things that really struck us as we were putting together the NIH-wide strategic plan for autoimmune disease research was that if we start with what matters patients, then we’re gonna be answering important biologic questions. And the other thing that I really want to emphasize for everyone listening is that if we’re partners in this, then every study, even negative studies, will add to the knowledge base that moves the whole field forward.

People living with autoimmune disease should really know that their experience, their questions and involvement are actually vital to accelerating better treatments and ultimately prevention and cures. And this could not be done alone. And I think it’s really important that we see this as a partnership, because together we can do a lot more than any of us could do alone.

Mickey: I love that so much. Calling us all in, right? I love it.

Victoria Shanmugam: We, it needs everyone.

Mickey: Yeah!

[00:26:32] The Next 5 to 10 Years of Autoimmune Research

Mickey: So when we look ahead, what feels realistic to you for the next five to 10 years in terms of research and potential patient impacts? ‘Cause I know people are pretty used to things moving pretty slow, but you’ve told us about a lot of good things. What do you see coming?

Victoria Shanmugam: Yeah. There’s a lot of potential. NIH is committed to advancing progress in autoimmune disease. And to achieve that mission, you know, it takes multiple avenues. So we are continuing to support fundamental research to identify new therapeutic targets. But it’s also essential to support translational research that turns those targets and new discoveries into clinical treatments that can ultimately improve the health of people living with these diseases.

On top of that or layered on top of that, it’s really important to build capacity for autoimmune disease research through, not only the development of new tools, new techniques, new methods and skilled workforce, but also the infrastructure allows us to run clinical trials and to bring therapies to our patients. These priorities are just vital for advancing and translating scientific discoveries into improved outcomes for people living with autoimmune disease.

As I mentioned, that interest and research into the preclinical phase of disease is another area of focus. And I think we’ve learned a lot from the Type I diabetes community where they’ve been able to not only identify the individuals that are high risk for progressing from preclinical Type I diabetes to full-blown Type I diabetes, but they also were able to identify a target to alter the immune system in that phase. That is now an FDA-approved therapy for people at risk for Type I diabetes to prevent progression to full-blown Type I. And that’s completely shifted the paradigm for that disease. And that success really tells us what’s possible for these other autoimmune disease conditions.

So I wanna kinda land on the thought that the future is really bright. I think in the next five to ten years, we’re gonna see huge advances in research and potential impact for our patients.

Mickey: I love that.

[00:28:49] How The Autoimmune Community Can Stay Engaged and Informed

Mickey: So here’s a question that I know you’ll have a great answer to because I’ve been following you and some of this work for a while. But I know our listeners would love to know the ways that patients or communities can stay informed about or engage with these ongoing research efforts.

Victoria Shanmugam: Oh, perfect lead in. Yes. We’d love for all of your listeners to join us. Actually every quarter. The Office of Autoimmune Disease Research hosts an open updates on OADR session. Uh, it’s typically held about a week after our internal coordinating committee meets. We give a fairly high level update on what’s going on in the life of the office, and then there is a little bit of an open session where we let people unmute and tell us what’s going on in their lives and the lives of their organizations.

It’s a really nice way for our community members to engage, share their thoughts and experiences. We always learn a lot from our who attend those sessions. And it’s really a, a very open forum. Anyone can speak, just raise your hand and unmute. You do have to attend live, so those sessions are not recorded. But we are happy for people to drop in when they can, and I hope that you guys can join us.

Mickey: I love that so much, and we’ll have the links to that in the show notes.

[00:30:16] What Dr. Shanmugam Wants Listeners To Understand About Autoimmune Disease Research

Mickey: Lastly Dr. Shanmugam, this has been such a great interview. Is there anything you’d like listeners to better understand about autoimmune disease research or where things are headed?

Victoria Shanmugam: Oh, I would just say your voice really matters. I think it’s really important to continue talking about how important autoimmune disease research is. Continued sustained funding is essential to support and expand the work both of OADR and the NIH more generally, and to ensure that scientific discoveries reach the patients living with autoimmune diseases across the United States.

Mickey: Thank you so much. That’s such a perfect closing message. Dr. Shanmugam, thank you for joining me today, for sharing your perspective on the future of autoimmune disease research.

[00:31:00] Wrap-Up and Closing

Mickey: What really stands out to me from this conversation is there’s so much more coordination, collaboration, and momentum in this field than ever before, and it sounds like you’ve got a lot of work ahead, but it’s so encouraging to hear about the investments that are being made to better understand autoimmune disease and ultimately improve the lives of patients like myself in this community. So thank you so much for sharing with us.

For everybody listening, we’re going to include links in the show notes to everything we referenced today, like the Office of Autoimmune Disease Research website. You can sign up for the email list, learn about some of the quarterly webinars and any other public events, and stay up to date on the latest initiatives and research opportunities.

As somebody who has spent many years in the autoimmune community, I have personally enjoyed seeing more opportunities for patients, advocates, researchers, and organizations to all come together around these conversations. Staying connected and informed is one of the ways we can all help move this field forward.

So thank you everybody for listening to the Autoimmune Wellness Podcast. If you enjoyed this episode, be sure to subscribe, leave a review, and share it with somebody who might benefit from the conversation. Until next time, take care!