Autoimmune Association and Patient Advocacy Organizations Host Dr. Vicky Shanmugam, Director of the Office of Autoimmune Disease Research

The Autoimmune Association, along with partners in the autoimmune patient advocacy community, presented a luncheon last week in Washington, D.C. featuring Victoria Shanmugam, MD, director of the Office of Autoimmune Disease Research (OADR) within the Office of Research on Women’s Health at The National Institutes of Health. With an introduction by Dr. Nina Luning Prak, chair of the Autoimmune Association’s Medical and Scientific Advisory Council, Dr. Shanmugam provided a look into emerging developments in autoimmune disease research.

The Autoimmune Association was joined by Arthritis Foundation, Celiac Disease Foundation, Crohn’s and Colitis Foundation, Lupus Foundation of America, National Psoriasis Foundation, National Scleroderma Foundation, and the Sjögren’s Foundation in hosting the luncheon.

With $10 million in funding, OADR has focused on research that brings together experts from different fields and NIH Institutes. This approach has created a solid starting point for addressing the challenges of autoimmune diseases.

Dr. Shanmugam highlighted her office’s accomplishments and shared her vision for the future:

Research That Could Change Lives

Autoimmunity can start years before symptoms appear, with autoantibodies detectable up to six years early. This discovery could lead to treatments during the “pre-disease” phase, preventing full-blown illness. Similar progress in Type 1 diabetes research shows the potential to delay or prevent autoimmune diseases like lupus or multiple sclerosis, creating a more manageable future for millions.

Building the Framework for Progress

OADR is working on establishing a better framework using comma data elements that can be used as a template for other autoimmune diseases. Additionally, a gap analysis identified autoimmune inner ear disease as an overlooked research need.

Pioneering a New Approach to Data

OADR is piloting a federated data platform to connect existing databases, allowing researchers to access vast data without building a centralized system. This innovative approach could speed up autoimmune research and new treatments.

Bridging Gaps Across NIH Institutes

OADR has funded 41 projects across 12 NIH Institutes in one year, fostering collaboration and interdisciplinary research. By breaking down silos, they are paving the way for breakthroughs in understanding and treating autoimmunity.

Engaging Patients and the Public

OADR hosts quarterly updates open to the public to encourage transparency and input. A recent Request for Information invited feedback on their strategic plan, which will guide research priorities and unify efforts across NIH, with the final plan expected in August 2025.

As Dr. Shanmugam emphasized that sustained progress in autoimmune research requires collective effort. She called upon leaders in autoimmune community to contribute to this effort by:

• Advocating for Funding: Increased investment in infrastructure, training, and innovative therapies is essential to advancing autoimmune research.
• Collaborating on Strategic Action Plans: By aligning our efforts, we can amplify the accomplishments of OADR and drive meaningful change.
• Uniting the Autoimmune Community: Advocacy during Autoimmune Awareness Month and beyond is crucial to raising awareness and securing resources for research and patient care.

We are thrilled about the progress and the promising future of autoimmune research. The efforts of OADR and the broader scientific community are paving the way for much-needed change. Currently, none of these diseases are curable, but we are determined to change that. We look forward to a future where autoimmune diseases can not only be effectively treated but also prevented, bringing hope and transformative possibilities to millions of individuals and families.