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The Future of Autoimmune Research with Victoria Shanmugam, Director of the Office of Autoimmune Disease Research (Ep 089)
Episode 8915th June 2026 • The Autoimmune Wellness Podcast • Mickey Trescott of Autoimmune Wellness
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Episode 89: The Future of Autoimmune Research with Victoria Shanmugam, Director of the Office of Autoimmune Disease Research

Autoimmune disease affects an estimated 50 million Americans, yet for decades these conditions have often received less attention, coordination, and funding than other major chronic diseases.

That landscape is beginning to change.

In this episode of the Autoimmune Wellness Podcast, Mickey Trescott is joined by Dr. Victoria Shanmugam, rheumatologist, physician-scientist, and Director of the Office of Autoimmune Disease Research (OADR) at the National Institutes of Health. Created by Congress in 2023, the OADR was established to coordinate autoimmune disease research across the NIH and help accelerate progress in understanding, treating, preventing, and ultimately curing autoimmune diseases.

Together, Mickey and Dr. Shanmugam discuss why the office was created, how autoimmune research is evolving, and the most promising areas of innovation currently underway. They explore everything from environmental triggers and large-scale data platforms to early disease detection, CAR-T therapies, and the future of personalized autoimmune medicine.

This conversation offers a hopeful and practical look at where autoimmune research is headed—and what that progress could mean for patients over the next decade.

In this episode, you'll learn:

  • Why the Office of Autoimmune Disease Research was created and what its mission is
  • How autoimmune diseases intersect with every organ system and NIH research institute
  • What the first NIH-wide Strategic Plan for Autoimmune Disease Research includes
  • Why studying multiple autoimmune diseases together may accelerate discoveries
  • How environmental exposures may influence autoimmune disease risk and progression
  • The role of large-scale collaborations and data-sharing platforms in research
  • Why early detection and preclinical autoimmune disease are major areas of focus
  • How Type 1 diabetes research is shaping new approaches to prevention
  • What CAR-T therapies and other immune-targeted treatments may offer in the future
  • Why patient participation and advocacy remain essential to research progress
  • What researchers hope to achieve over the next five to ten years in autoimmune medicine

Resources:

Episode Timeline:

00:00 – Why autoimmune research is entering a new era

01:41 – Introducing Dr. Victoria Shanmugam

03:29 – What is the Office of Autoimmune Disease Research?

04:58 – Why autoimmune diseases have historically been under-researched

07:19 – Goals of the OADR and coordination across NIH

09:54 – Studying more than 140 autoimmune diseases together

12:00 – The NOURISH challenge and nutrition research initiatives

14:07 – Promising areas of autoimmune disease research

16:09 – Environmental exposures and the EXACT Plan Network

17:28 – Autoimmune Centers of Excellence and cross-disease collaboration

18:34 – New clinical trials and prevention-focused research

20:02 – Early detection and preclinical autoimmune disease

21:18 – Data platforms and large-scale collaboration efforts

25:18 – How patients should think about research progress

26:32 – What the next 5–10 years may bring

28:49 – How patients can stay informed and engaged

30:16 – Why patient voices matter in research

31:00 – Wrap-up and closing reflections

Transcripts

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Mickey (2): Autoimmune disease affects an estimated fifty million Americans.

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That is more people than are living with cancer, heart disease, and many

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other major health conditions combined.

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And yet for decades, autoimmune diseases have often existed in

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the shadows of medical research.

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Patients have faced long diagnostic delays, limited treatment options,

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and too often the feeling that their condition wasn't fully understood.

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But that landscape is beginning to change.

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In recent years, we've seen growing recognition that autoimmune diseases

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represent a major public health challenge.

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New research initiatives are emerging, large-scale collaborations are

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bringing scientists together across specialties, and as of 2023, the

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National Institutes of Health has a dedicated Office of Autoimmune Disease

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Research focused on coordinating and accelerating progress across the

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entire autoimmune disease spectrum.

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Today, we're talking with the person leading that effort.

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Dr. Victoria Shanmugam serves as Director of the Office of Autoimmune

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Disease Research within the NIH Office of Research on Women's Health.

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She's a physician scientist, rheumatologist, and a recognized

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leader in autoimmune disease research.

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In this conversation, we'll explore why the office was created, what it's working

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on, where the most exciting areas of research are emerging, and what all of

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this could mean for people living with autoimmune disease in the years ahead.

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Welcome back to the Autoimmune Wellness Podcast.

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I'm your host, Mickey Trescott, and today I'm honored to be joined by Dr.

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Victoria Shanmugam, director of the Office of Autoimmune Disease Research

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at the National Institutes of Health.

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Dr. Shanmugam is a physician-scientist, rheumatologist, and a leader

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in autoimmune disease research.

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She earned her degree in physiology from Oxford University and her

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medical degree from Imperial College School of Medicine in London,

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graduating with honors in medicine.

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She completed her internal medicine residency and rheumatology fellowship

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at Georgetown University, where she later joined the faculty and built

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a distinguished career caring for patients with complex autoimmune

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diseases while also leading research and medical education initiatives.

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Throughout her career, Dr. Shanmugam has been deeply involved

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in advancing our understanding of autoimmune and rheumatic diseases.

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Prior to joining the NIH, she served in a number of leadership roles in academic

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medicine and is widely recognized for her work in systemic sclerosis, vasculitis,

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and other autoimmune conditions, as well as for her commitment to improving

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patient care and accelerating research.

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Today, she leads the Office of Autoimmune Disease Research, which was established

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to strengthen coordination across the NIH and help advance research efforts

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spanning the many different autoimmune diseases that affect millions of people.

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I'm so excited to learn more about the work happening behind the

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scenes, the opportunities that lie ahead, and how patients can better

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understand the evolving landscape of autoimmune disease research.

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Before we begin, a quick reminder that this podcast is intended for

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educational and informational purposes only, and is not a substitute for

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medical advice, diagnosis, or treatment.

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Always consult your healthcare team regarding any medical

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questions or decisions.

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

Victoria Shanmugam:

Oh, thank you, Mickey.

Victoria Shanmugam:

That's such a great introduction, and I'm really delighted to

Victoria Shanmugam:

join you on the show today.

Mickey:

Awesome.

Mickey:

Well, let's just jump right in.

Mickey:

Can you share a bit about your role and what the Office of Autoimmune

Mickey:

Disease Research is and why it was created in the first place?

Victoria Shanmugam:

Absolutely.

Victoria Shanmugam:

So I am the director of the Office of Autoimmune Disease Research, also

Victoria Shanmugam:

fondly known as OADR at the NIH.

Victoria Shanmugam:

The office, as you mentioned, is quite young.

Victoria Shanmugam:

It was formed at the direction of Congress in the Consolidated

Victoria Shanmugam:

Appropriations Act in 2023.

Victoria Shanmugam:

And it was tasked with six specific directives: to coordinate the development

Victoria Shanmugam:

of an NIH-wide strategic plan for autoimmune disease research, to identify

Victoria Shanmugam:

emerging areas of innovation and research opportunities, to coordinate

Victoria Shanmugam:

and foster collaborative research across the NIH, to annually do an evaluation

Victoria Shanmugam:

of the NIH autoimmune disease research portfolio, to provide resources to

Victoria Shanmugam:

support planning, collaboration, and innovation, and to develop some form of

Victoria Shanmugam:

publicly available, centralized repository for autoimmune disease research.

Victoria Shanmugam:

And we can talk a little bit more about that as we get deeper into the podcast.

Victoria Shanmugam:

But those six directives, along with some of the findings of a National

Victoria Shanmugam:

Academies of Sciences, Engineering and Medicine report, looking at enhancing

Victoria Shanmugam:

NIH research on autoimmune disease, were what really guided the establishment

Victoria Shanmugam:

of the office and are foundational to the work that we're doing today.

Mickey:

Awesome.

Mickey:

Well, thank you for that, and I'm sure everybody's really interested to know

Mickey:

kind of where this work came from.

Mickey:

Autoimmune disease affects so many people, yet historically it hasn't

Mickey:

always been a central focus of research.

Mickey:

I'd love to know from your perspective what has contributed to that and

Mickey:

what do you see changing now?

Victoria Shanmugam:

Yeah.

Victoria Shanmugam:

So there are, as you mentioned in the intro, about 50 million Americans

Victoria Shanmugam:

estimated to be living with autoimmune disease, and the rates are increasing.

Victoria Shanmugam:

We don't exactly know why, but we also are struggling to know the

Victoria Shanmugam:

exact prevalence of many autoimmune diseases because we don't have good

Victoria Shanmugam:

comprehensive longitudinal data sets.

Victoria Shanmugam:

When we take together all of the autoimmune diseases, as you

Victoria Shanmugam:

mentioned, this is one of the most common groups of chronic conditions

Victoria Shanmugam:

affecting the American people.

Victoria Shanmugam:

But we don't have a good coordinated structure for studying them.

Victoria Shanmugam:

These diseases are quite often systemic, and when we look at the body as a whole,

Victoria Shanmugam:

we recognize that autoimmune disease research really intersects with every

Victoria Shanmugam:

organ and system in the body and therefore intersects with the mission of every

Victoria Shanmugam:

single institute and center at the NIH.

Victoria Shanmugam:

So a coordinated approach is really essential.

Victoria Shanmugam:

I'm excited to tell your listeners that in July of 2025, we published

Victoria Shanmugam:

the first ever NIH-wide strategic plan for autoimmune disease research.

Victoria Shanmugam:

And and that's really giving us a guiding framework and a roadmap

Victoria Shanmugam:

for how to approach the scientific priorities over the next five years.

Victoria Shanmugam:

We identify in that plan some specific priorities, objectives, and

Victoria Shanmugam:

cross-cutting themes that the NIH thinks are important to focus on.

Victoria Shanmugam:

And within those priorities, there is an objective to expand autoimmune disease

Victoria Shanmugam:

research focused on the many autoimmune diseases that co-occur with each other,

Victoria Shanmugam:

as well as the comorbid conditions that co-occur alongside autoimmune diseases

Victoria Shanmugam:

such as endometriosis, fibromyalgia, often with other autoimmune diseases.

Victoria Shanmugam:

And again, the pathogenesis for many of those conditions are, are really unclear.

Mickey:

Wonderful.

Mickey:

Yeah, as somebody who is a representative of the three autoimmune diseases

Mickey:

club, I'm really excited to hear about that, and I know a lot of our

Mickey:

listeners are very curious about those conditions that seem to tag along with

Mickey:

autoimmune conditions even though they might not be autoimmune themselves.

Mickey:

So thank you so much for sharing that.

Mickey:

What are the main goals of the Office of Autoimmune Disease

Mickey:

Research, and how is that helping to coordinate efforts across the NIH?

Victoria Shanmugam:

Well, the mission of the Office of Autoimmune Disease

Victoria Shanmugam:

Research is to support high-priority autoimmune disease research, identify

Victoria Shanmugam:

emerging areas of innovation, and really foster collaboration across the

Victoria Shanmugam:

NIH institutes and centers or ICs or ICOs, institute centers and offices.

Victoria Shanmugam:

As I mentioned, autoimmune disease research really intersects

Victoria Shanmugam:

with the work of every single institute and center at NIH.

Victoria Shanmugam:

But that means that the research is touched by all the ICs, but really

Victoria Shanmugam:

led by none, because it isn't, kind of owned by any single IC.

Victoria Shanmugam:

The actual largest funder of autoimmune disease research is the National

Victoria Shanmugam:

Institute of Diabetes, Digestive, and Kidney Diseases, so NIDDK.

Victoria Shanmugam:

In part due to the very large Type I diabetes appropriation, which

Victoria Shanmugam:

really had transformative impact on the management of people living with

Victoria Shanmugam:

and at risk for Type I diabetes.

Victoria Shanmugam:

And what that tells us and has shown us is that with investment, we can really

Victoria Shanmugam:

shift the paradigm in understanding, not only diagnosis and treatment, but also,

Victoria Shanmugam:

potentially even get to prevention, for these diseases and has been able to get

Victoria Shanmugam:

there in Type I diabetes and tells us it's probably possible in, in many of

Victoria Shanmugam:

these other autoimmune diseases too.

Mickey:

Wow.

Victoria Shanmugam:

As I mentioned, we do all of our work in partnership

Victoria Shanmugam:

with the ICs, and the roadmap for that work is the NIH-wide Strategic

Victoria Shanmugam:

Plan for Autoimmune Disease Research.

Victoria Shanmugam:

If you pull it up online, and I think there's a link in your show notes,

Victoria Shanmugam:

you'll see there's five main priorities.

Victoria Shanmugam:

We want to accelerate scientific discovery and diagnosis, treatment,

Victoria Shanmugam:

prevention, and cure, and we spend a lot of time thinking about that word

Victoria Shanmugam:

cure and was it really possible, and we decided we needed to include cure.

Victoria Shanmugam:

To promote research focused on enhancing health for people living with

Victoria Shanmugam:

and at risk for autoimmune disease.

Victoria Shanmugam:

To support research to understand this full complexity of autoimmune

Victoria Shanmugam:

diseases and indeed the complexity across the lifespan as well.

Victoria Shanmugam:

To build and maintain capacity for autoimmune disease research.

Victoria Shanmugam:

And then, the fifth objective is really a, a critical one, to build

Victoria Shanmugam:

and strengthen our partnerships and interdisciplinary collaborations across

Victoria Shanmugam:

the autoimmune disease community.

Mickey:

I love that.

Mickey:

That is all just such an important scope of work that you guys are

Mickey:

collaborating on there, and probably pretty overwhelming when you

Mickey:

consider all of the single diseases.

Mickey:

And that's actually the next thing I really wanted to talk about is the

Mickey:

challenge in autoimmune disease, really just how many different conditions fall

Mickey:

under the umbrella of autoimmune disease.

Mickey:

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

Victoria Shanmugam:

Yeah, it's a great question.

Victoria Shanmugam:

The autoimmune diseases, as you say, are an incredibly varied group of conditions.

Victoria Shanmugam:

They affect every part of the body.

Victoria Shanmugam:

Many of them manifest at different points in the life course and

Victoria Shanmugam:

some across the life course.

Victoria Shanmugam:

There are more than a hundred and forty known autoimmune disease and there may

Victoria Shanmugam:

be more that we have not yet defined.

Victoria Shanmugam:

And the symptoms obviously vary extensively, based on organs involved

Victoria Shanmugam:

and the different diseases involved.

Victoria Shanmugam:

But because the immune system traffics into every organ, we know

Victoria Shanmugam:

that autoimmune diseases can affect any system in the body, sometimes

Victoria Shanmugam:

many systems simultaneously.

Victoria Shanmugam:

And I think what that really calls out to us is that this is an amazing

Victoria Shanmugam:

opportunity to really understand the immune system as that missing link.

Victoria Shanmugam:

We are approaching things very broadly.

Victoria Shanmugam:

When the office was formed, we convened a coordinating committee for autoimmune

Victoria Shanmugam:

disease research, and that committee has really a brain trust of experts from

Victoria Shanmugam:

every single institute and center at NIH.

Victoria Shanmugam:

And they come together every month to discuss, both what our strategy should be

Victoria Shanmugam:

in terms of our approaches, and then also to think about not only what can we do

Victoria Shanmugam:

today, but what can we do for the future.

Victoria Shanmugam:

And I think one of the points that we really thought about quite deeply when we

Victoria Shanmugam:

were putting together the strategic plan and as we start new strategic initiatives

Victoria Shanmugam:

is, not just what the scientists and patients can do today, but what will the

Victoria Shanmugam:

patients of 2030 and 2050 wish we'd done today to ensure that autoimmune disease

Victoria Shanmugam:

research can really push the boundaries of what's possible as we move to the future.

Victoria Shanmugam:

We have a fairly modest budget in the Office of Autoimmune Disease Research,

Victoria Shanmugam:

but we try to use it really wisely, across and in collaboration with the institutes

Victoria Shanmugam:

and centers to support a wide range of research, from fundamental immunologic

Victoria Shanmugam:

research, that looks at the mechanisms of autoimmunity and autoimmune disease.

Victoria Shanmugam:

We have supported a number of projects investigating preclinical

Victoria Shanmugam:

autoimmunity, studies that are focusing on treatments, both improving treatments

Victoria Shanmugam:

and then also helping those treatments reach patients across America.

Victoria Shanmugam:

And then we also support some infrastructure for autoimmune

Victoria Shanmugam:

disease research, as well as some novel public-private partnerships

Victoria Shanmugam:

to improve engagement for people living with autoimmune disease

Victoria Shanmugam:

in the research continuum.

Victoria Shanmugam:

One of the initiatives that I know you were engaged with, Mickey, in 2025

Victoria Shanmugam:

to 2026 was the NOURISH initiative.

Victoria Shanmugam:

This was the Nutrition for Our Immune System Health Autoimmunity Challenge.

Victoria Shanmugam:

The beauty of challenge mechanisms are that they have a slightly lower bar of

Victoria Shanmugam:

entry in terms of complexity of submitting an application, which means we can

Victoria Shanmugam:

make them quite open to our community.

Victoria Shanmugam:

So this was a crowdsourced ideation challenge for our community to

Victoria Shanmugam:

submit some ideas on how to better integrate diet and nutrition

Victoria Shanmugam:

into autoimmune disease research.

Victoria Shanmugam:

We were really excited to see the ideas that came in, and if you didn't catch

Victoria Shanmugam:

the webinar live, I really encourage you to watch the winners' webinar.

Victoria Shanmugam:

The link is still live on our nourishchallenge.org website.

Victoria Shanmugam:

You can watch the video and see the winners talk a

Victoria Shanmugam:

little bit about their ideas.

Victoria Shanmugam:

But that was something where, you know, we had a unique opportunity, to

Victoria Shanmugam:

really bring our community in to this kind of dynamic research paradigm,

Victoria Shanmugam:

and work together to come up with some ways to move this field forward.

Mickey:

Yeah.

Mickey:

I love that, and I love that it sounds like you guys are really looking for

Mickey:

the common threads in really trying to help improve the lives of people

Mickey:

with all of the scope of autoimmune disease instead of honing in on one

Mickey:

or two that affect the most people.

Mickey:

So I know the community is really appreciative of that.

Mickey:

And I loved participating in that challenge and hearing

Mickey:

about everybody that won.

Mickey:

That was just such an inspiring group.

Mickey:

So thank you for doing that.

Mickey:

What are some of the most promising areas of autoimmune disease research right now

Mickey:

that patients like me should be aware of?

Victoria Shanmugam:

Oh, I'm so thrilled that you asked that question 'cause I

Victoria Shanmugam:

have so many good things to tell you.

Victoria Shanmugam:

So, OADR is small and fairly new, but I'm really pleased that we've been able to

Victoria Shanmugam:

do some amazing things and support some incredible projects since we started.

Victoria Shanmugam:

Back in 2023, one of the inaugural funding opportunities from OADR was a

Victoria Shanmugam:

program called the EXACT Plan Network.

Victoria Shanmugam:

National research collaborative focused on understanding how

Victoria Shanmugam:

environmental exposures shape autoimmune disease risk onset and outcomes.

Victoria Shanmugam:

And the goals of this network were to build a system-level view of how

Victoria Shanmugam:

different factors across our lifespan, like chemicals, infections, diet, other

Victoria Shanmugam:

exposures, interact with our cells and tissues and organs and place us at

Victoria Shanmugam:

risk of multiple autoimmune diseases.

Victoria Shanmugam:

There were a number of exploratory and developmental projects supported through

Victoria Shanmugam:

this initiative, and they were really designed to help research institutions

Victoria Shanmugam:

lay the groundwork for studying this over the longer term, building partnerships,

Victoria Shanmugam:

strengthening infrastructure, and trying to develop the scientific capabilities

Victoria Shanmugam:

needed to contribute to a kind of larger research mission in this area.

Victoria Shanmugam:

That network is still working together, helping to move beyond studying one

Victoria Shanmugam:

autoimmune disease at a time and really integrating understanding of

Victoria Shanmugam:

how different environmental factors at different points in our life

Victoria Shanmugam:

might trigger and shape disease across the many different autoimmune

Victoria Shanmugam:

diseases and across our lifespans.

Victoria Shanmugam:

Another really exciting award that we have been co-funding in conjunction with the

Victoria Shanmugam:

National Institute of Allergy Infectious Diseases, or NIAID, is the Autoimmune

Victoria Shanmugam:

Centers of Excellence, or ACE program.

Victoria Shanmugam:

And the ACE network is a long-standing program of NIAID, but through funding

Victoria Shanmugam:

from our office, we were able to bring an additional center online within

Victoria Shanmugam:

that group, and that center focuses on autoimmune endocrinopathies,

Victoria Shanmugam:

so Type I diabetes, autoimmune thyroid disease, and a number of

Victoria Shanmugam:

other endocrine autoimmune diseases.

Victoria Shanmugam:

And that's really exciting because typically those researchers would

Victoria Shanmugam:

not have collaborated with the people studying rheumatoid arthritis and lupus,

Victoria Shanmugam:

and other rheumatologic autoimmune diseases, and they typically would

Victoria Shanmugam:

not have interacted closely with the basic science immunologists.

Victoria Shanmugam:

But by bringing this additional center into the ACE network, it's

Victoria Shanmugam:

really catalyzed opportunities for collaboration, studies looking at the

Victoria Shanmugam:

immunologic mechanisms of these diseases, most importantly, across diseases.

Victoria Shanmugam:

So really getting to that point that you made earlier, that you're one of

Victoria Shanmugam:

the people who has multiple autoimmune diseases, this is really common.

Victoria Shanmugam:

And as a rheumatologist who used to see patients in the clinic, I have seen

Victoria Shanmugam:

this many times, and yet we have not got a great mechanism for studying those

Victoria Shanmugam:

co-occurrences of autoimmune disease.

Victoria Shanmugam:

And this is a way that we can actually really accelerate

Victoria Shanmugam:

the science in that arena.

Victoria Shanmugam:

I wanna tell you also about a couple clinical trials that we're supporting.

Victoria Shanmugam:

That again, is like another place where we can really invest to

Victoria Shanmugam:

support accelerating the science.

Victoria Shanmugam:

One that we're particularly excited about is the AVERT study, stand for

Victoria Shanmugam:

Atrioventricular Block Elimination by Rosanoliximab Treatment.

Victoria Shanmugam:

So that's a mouthful.

Victoria Shanmugam:

But this is looking at a new treatment for women with the SSA

Victoria Shanmugam:

antibody or Sjogren's antibody.

Victoria Shanmugam:

We see this both in Sjogren's disease and then also in lupus, and

Victoria Shanmugam:

sometimes in rheumatoid arthritis.

Victoria Shanmugam:

Women who happen to carry this autoantibody are at risk of having a

Victoria Shanmugam:

baby that is affected by a condition called congenital heart block.

Victoria Shanmugam:

The antibodies from the mother can cross the placenta and cause a problem

Victoria Shanmugam:

with the baby's heart formation.

Victoria Shanmugam:

And they very often can develop stillbirth, unfortunately.

Victoria Shanmugam:

So through funding from the Office of Autoimmune Disease Research in

Victoria Shanmugam:

conjunction with the National Institute of Arthritis, Musculoskeletal and Skin

Victoria Shanmugam:

Diseases, or NIAMS, we've been able to support this clinical trial that's

Victoria Shanmugam:

looking at a new monoclonal antibody, given, during the pregnancy, during

Victoria Shanmugam:

that critical window when the antibodies can cross the placenta and cause the

Victoria Shanmugam:

problem with the baby's heart formation.

Victoria Shanmugam:

And this therapy, looking very promising, as something that might be

Victoria Shanmugam:

able to reduce that antibody burden, and reduce the risk to the baby.

Victoria Shanmugam:

This particular study is led by Jill Byon New York University and

Victoria Shanmugam:

is really focused on trying to study this in women that are at high risk.

Victoria Shanmugam:

We also have been working to try and support studies that are looking at

Victoria Shanmugam:

earlier detection of autoimmune diseases.

Victoria Shanmugam:

We're increasingly recognizing that many autoimmune diseases have this prodromal

Victoria Shanmugam:

phase, and I think patients living with autoimmune disease will recollect

Victoria Shanmugam:

this in themselves, where there are abnormalities in the immune system,

Victoria Shanmugam:

even before the doctors can really detect a definable autoimmune disease.

Victoria Shanmugam:

If we could better identify those at highest risk through biomarkers,

Victoria Shanmugam:

through autoantibodies, through immune profiling, we potentially

Victoria Shanmugam:

could get to a place where we can diagnose disease earlier and hopefully

Victoria Shanmugam:

intervene perhaps before progression.

Victoria Shanmugam:

That's the paradigm that we've seen be successful in Type I diabetes,

Victoria Shanmugam:

and I think with continued work in this field, then we could potentially

Victoria Shanmugam:

see this in other diseases as well.

Victoria Shanmugam:

There's lots of exciting things coming down the pike in autoimmunity,

Victoria Shanmugam:

as you probably have been hearing.

Victoria Shanmugam:

New monoclonal antibodies, new disease-modifying treatments, some ways

Victoria Shanmugam:

to harness the immune system itself, alter the immune responses through chimeric

Victoria Shanmugam:

antigen receptor or CAR T-cell therapy and even regulatory T-cell therapies

Victoria Shanmugam:

where you engineer the T-cells to kinda dampen down the immune responses.

Victoria Shanmugam:

This area of science is evolving really rapidly, and I think shows

Victoria Shanmugam:

great hope, both as treatment and potentially as a durable remission for

Victoria Shanmugam:

people living with autoimmune disease.

Victoria Shanmugam:

We really need to be able to support the studies and the

Victoria Shanmugam:

research that must be done.

Mickey:

Wow.

Mickey:

Yeah, that is, that is so much.

Mickey:

The one thing that really stands out to me as somebody who recently in the

Mickey:

last year got diagnosed with my third autoimmune condition that I started having

Mickey:

symptoms 15 years ago, we all know how long it takes sometimes for your body to

Mickey:

really express enough factors in order to get a diagnosis, so I'm particularly

Mickey:

excited about that research for early detection and diagnosis and helping

Mickey:

people get on their feet faster, right?

Mickey:

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.

Victoria Shanmugam:

So yes, we hear you, and I think you're not alone.

Victoria Shanmugam:

I've seen this many times myself in my own clinic, and I hear it, from many patients.

Victoria Shanmugam:

So I think it's really important work.

Mickey:

Yeah.

Mickey:

Thank you so much.

Mickey:

So another thing that we're hearing about are things like data platforms

Mickey:

and large scale collaborations.

Mickey:

Basically, what do we do with all this information?

Mickey:

How are these changing the pace or the direction of the research

Mickey:

that's being done right now?

Victoria Shanmugam:

So glad you asked that question.

Victoria Shanmugam:

This is something our team and certainly our coordinating committee

Victoria Shanmugam:

for autoimmune disease research has been thinking really deeply about.

Victoria Shanmugam:

As I mentioned, the six congressional directives that set up the office,

Victoria Shanmugam:

number six was this task to develop some form of centralized repository for

Victoria Shanmugam:

autoimmune disease research, and we really approached this with a very broad lens.

Victoria Shanmugam:

As you and your listeners know, many conditions that we currently group

Victoria Shanmugam:

under one diagnosis are likely made up of biologically distinct subtypes.

Victoria Shanmugam:

And as we mentioned, people who have one autoimmune disease are at

Victoria Shanmugam:

a higher probability of developing other autoimmune diseases.

Victoria Shanmugam:

And so really important that we have mechanisms to allow us

Victoria Shanmugam:

to look at shared pathways that could contribute to autoimmunity.

Victoria Shanmugam:

We're at this really pivotal time.

Victoria Shanmugam:

There have been these amazing advances in genomics, proteomics, and other

Victoria Shanmugam:

molecular tools that are helping us define subgroups of disease more precisely.

Victoria Shanmugam:

But we're also very fortunate because computational power that we have

Victoria Shanmugam:

today far exceeds what was possible five years ago, even ten years ago.

Victoria Shanmugam:

And we really wanted to bring those two pieces together in a complementary way.

Victoria Shanmugam:

So through funding from the Office of Autoimmune Disease Research, we have

Victoria Shanmugam:

been collaborating with the National Library of Medicine, or NLM, establish

Victoria Shanmugam:

a federated digital data ecosystem.

Victoria Shanmugam:

Right now, that's stood up within the walls of the NIH, within the

Victoria Shanmugam:

National Library of Medicine, and we've called it the Autoimmune Disease

Victoria Shanmugam:

Analysis Platform Testing Space.

Victoria Shanmugam:

That stands for ADAPTS.

Victoria Shanmugam:

We picked that name because the immune system adapts, and we were looking

Victoria Shanmugam:

for something that could adapt and grow with the science over time.

Victoria Shanmugam:

And we know that as we learn more, we're gonna need to use this ecosystem and this

Victoria Shanmugam:

computational platform to do different things, and we thought that was a good

Victoria Shanmugam:

kinda metaphor for where we were heading.

Victoria Shanmugam:

The purpose of this platform is to allow researchers to analyze

Victoria Shanmugam:

distributed datasets for studying autoimmune disease research.

Victoria Shanmugam:

So what we're wanting to do is help researchers collaborate on these complex

Victoria Shanmugam:

analyses that they could not do with a single dataset or they could not do alone.

Victoria Shanmugam:

We're doing this right now within the walls of the NIH simply because we have

Victoria Shanmugam:

a structure that allows us to do this and kind of put it through its paces,

Victoria Shanmugam:

test it out, so that we can learn, where do we need to invest a little

Victoria Shanmugam:

more, what parts work easily, what parts are more complex, to sort of get

Victoria Shanmugam:

a little bit of control to the system.

Victoria Shanmugam:

But the beauty of this system is it supports governance and

Victoria Shanmugam:

privacy protection by design.

Victoria Shanmugam:

You don't move any data, so the federated model is that the computational power

Victoria Shanmugam:

really goes to the data to do the analysis and run the algorithm, but the data stays

Victoria Shanmugam:

in place, and there is no kind of exposure of the data to any outside entities.

Victoria Shanmugam:

We hope that with continued investment, that will be something that we can scale

Victoria Shanmugam:

more widely, so that we can have something that allows the entire autoimmune disease

Victoria Shanmugam:

research community to come together.

Victoria Shanmugam:

That will take time, and I think it's something that we will be kind

Victoria Shanmugam:

of, trying to develop over time.

Victoria Shanmugam:

But right now, working with this group of intramural investigators to really put

Victoria Shanmugam:

this through its paces and test whether or not this is gonna be the right model

Victoria Shanmugam:

to use for autoimmune disease research.

Mickey:

Oh, that is really impressive, and I'm really excited to hear

Mickey:

that you guys are using technology to its fullest potential to help

Mickey:

solve some of these problems.

Mickey:

So that's really exciting to hear about.

Mickey:

So my next question is for somebody living with autoimmune disease

Mickey:

today, how should they be thinking about progress in research?

Mickey:

What does that actually look like from your perspective?

Victoria Shanmugam:

Yeah.

Victoria Shanmugam:

So research is rarely a straight line.

Victoria Shanmugam:

And one of the things that really struck us as we were putting together the

Victoria Shanmugam:

NIH-wide strategic plan for autoimmune disease research was that if we start with

Victoria Shanmugam:

what matters patients, then we're gonna be answering important biologic questions.

Victoria Shanmugam:

And the other thing that I really want to emphasize for everyone listening

Victoria Shanmugam:

is that if we're partners in this, then every study, even negative

Victoria Shanmugam:

studies, will add to the knowledge base that moves the whole field forward.

Victoria Shanmugam:

People living with autoimmune disease should really know that

Victoria Shanmugam:

their experience, their questions and involvement are actually vital

Victoria Shanmugam:

to accelerating better treatments and ultimately prevention and cures.

Victoria Shanmugam:

And this could not be done alone.

Victoria Shanmugam:

And I think it's really important that we see this as a partnership,

Victoria Shanmugam:

because together we can do a lot more than any of us could do alone.

Mickey:

I love that so much.

Mickey:

Calling us all in, right?

Mickey:

I love it.

Victoria Shanmugam:

We, it needs everyone.

Mickey:

Yeah!

Mickey:

So when we look ahead, what feels realistic to you for the next five

Mickey:

to 10 years in terms of research and potential patient impacts?

Mickey:

'Cause I know people are pretty used to things moving pretty slow, but you've

Mickey:

told us about a lot of good things.

Mickey:

What do you see coming?

Victoria Shanmugam:

Yeah.

Victoria Shanmugam:

There's a lot of potential.

Victoria Shanmugam:

NIH is committed to advancing progress in autoimmune disease.

Victoria Shanmugam:

And to achieve that mission, you know, it takes multiple avenues.

Victoria Shanmugam:

So we are continuing to support fundamental research to identify

Victoria Shanmugam:

new therapeutic targets.

Victoria Shanmugam:

But it's also essential to support translational research that turns

Victoria Shanmugam:

those targets and new discoveries into clinical treatments that can

Victoria Shanmugam:

ultimately improve the health of people living with these diseases.

Victoria Shanmugam:

On top of that or layered on top of that, it's really important to build capacity

Victoria Shanmugam:

for autoimmune disease research through, not only the development of new tools,

Victoria Shanmugam:

new techniques, new methods and skilled workforce, but also the infrastructure

Victoria Shanmugam:

allows us to run clinical trials and to bring therapies to our patients.

Victoria Shanmugam:

These priorities are just vital for advancing and translating scientific

Victoria Shanmugam:

discoveries into improved outcomes for people living with autoimmune disease.

Victoria Shanmugam:

As I mentioned, that interest and research into the preclinical phase

Victoria Shanmugam:

of disease is another area of focus.

Victoria Shanmugam:

And I think we've learned a lot from the Type I diabetes community where

Victoria Shanmugam:

they've been able to not only identify the individuals that are high risk

Victoria Shanmugam:

for progressing from preclinical Type I diabetes to full-blown Type

Victoria Shanmugam:

I diabetes, but they also were able to identify a target to alter

Victoria Shanmugam:

the immune system in that phase.

Victoria Shanmugam:

That is now an FDA-approved therapy for people at risk for Type I diabetes

Victoria Shanmugam:

to prevent progression to full-blown Type I. And that's completely shifted

Victoria Shanmugam:

the paradigm for that disease.

Victoria Shanmugam:

And that success really tells us what's possible for these other

Victoria Shanmugam:

autoimmune disease conditions.

Victoria Shanmugam:

So I wanna kinda land on the thought that the future is really bright.

Victoria Shanmugam:

I think in the next five to ten years, we're gonna see huge advances in research

Victoria Shanmugam:

and potential impact for our patients.

Mickey:

I love that.

Mickey:

So here's a question that I know you'll have a great answer to

Mickey:

because I've been following you and some of this work for a while.

Mickey:

But I know our listeners would love to know the ways that patients or communities

Mickey:

can stay informed about or engage with these ongoing research efforts.

Victoria Shanmugam:

Oh, perfect lead in.

Victoria Shanmugam:

Yes.

Victoria Shanmugam:

We'd love for all of your listeners to join us.

Victoria Shanmugam:

Actually every quarter.

Victoria Shanmugam:

The Office of Autoimmune Disease Research hosts an open updates on OADR session.

Victoria Shanmugam:

Uh, it's typically held about a week after our internal coordinating committee meets.

Victoria Shanmugam:

We give a fairly high level update on what's going on in the life of the office,

Victoria Shanmugam:

and then there is a little bit of an open session where we let people unmute and

Victoria Shanmugam:

tell us what's going on in their lives and the lives of their organizations.

Victoria Shanmugam:

It's a really nice way for our community members to engage, share

Victoria Shanmugam:

their thoughts and experiences.

Victoria Shanmugam:

We always learn a lot from our who attend those sessions.

Victoria Shanmugam:

And it's really a, a very open forum.

Victoria Shanmugam:

Anyone can speak, just raise your hand and unmute.

Victoria Shanmugam:

You do have to attend live, so those sessions are not recorded.

Victoria Shanmugam:

But we are happy for people to drop in when they can, and I

Victoria Shanmugam:

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.

Mickey:

Lastly Dr. Shanmugam, this has been such a great interview.

Mickey:

Is there anything you'd like listeners to better understand about autoimmune disease

Mickey:

research or where things are headed?

Victoria Shanmugam:

Oh, I would just say your voice really matters.

Victoria Shanmugam:

I think it's really important to continue talking about how important

Victoria Shanmugam:

autoimmune disease research is.

Victoria Shanmugam:

Continued sustained funding is essential to support and expand the work both of

Victoria Shanmugam:

OADR and the NIH more generally, and to ensure that scientific discoveries

Victoria Shanmugam:

reach the patients living with autoimmune diseases across the United States.

Mickey:

Thank you so much.

Mickey:

That's such a perfect closing message.

Mickey:

Dr. Shanmugam, thank you for joining me today, for sharing your perspective on

Mickey:

the future of autoimmune disease research.

Mickey:

What really stands out to me from this conversation is there's so much more

Mickey:

coordination, collaboration, and momentum in this field than ever before, and it

Mickey:

sounds like you've got a lot of work ahead, but it's so encouraging to hear

Mickey:

about the investments that are being made to better understand autoimmune disease

Mickey:

and ultimately improve the lives of patients like myself in this community.

Mickey:

So thank you so much for sharing with us.

Mickey:

For everybody listening, we're going to include links in the

Mickey:

show notes to everything we referenced today, like the Office of

Mickey:

Autoimmune Disease Research website.

Mickey:

You can sign up for the email list, learn about some of the quarterly

Mickey:

webinars and any other public events, and stay up to date on the latest

Mickey:

initiatives and research opportunities.

Mickey:

As somebody who has spent many years in the autoimmune community, I

Mickey:

have personally enjoyed seeing more opportunities for patients, advocates,

Mickey:

researchers, and organizations to all come together around these conversations.

Mickey:

Staying connected and informed is one of the ways we can all

Mickey:

help move this field forward.

Mickey:

So thank you everybody for listening to the Autoimmune Wellness Podcast.

Mickey:

If you enjoyed this episode, be sure to subscribe, leave a review, and

Mickey:

share it with somebody who might benefit from the conversation.

Mickey:

Until next time, take care!

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