In late July, the National Institutes of Health (NIH) released its first-ever NIH-Wide Strategic Plan for Autoimmune Disease Research, marking a significant step forward in the national effort to enhance and coordinate federal research on autoimmune diseases. This landmark document represents a new era of coordinated, multidisciplinary research aimed at accelerating discovery, improving diagnostics and treatments, and ultimately enhancing the lives of those affected by autoimmune diseases—including Sjögren’s.
The Sjögren’s Foundation has been engaged throughout the creation of the NIH Office of Autoimmune Disease Research and the development of this strategic plan. Our advocacy, input, and partnerships have helped ensure that the voices and needs of Sjögren’s patients and families are included in this national research agenda.
What’s in the NIH Strategic Plan?
The NIH-Wide Strategic Plan for Autoimmune Disease Research is a comprehensive blueprint designed to address the growing crisis of autoimmune diseases in the United States. With up to 50 million Americans living with one or more autoimmune diseases, and more than 140 distinct conditions identified—including Sjögren’s—the need for a unified, robust research strategy has never been greater.
The plan is built around five strategic priorities, each with specific objectives:
1. Accelerate Scientific Discovery in Diagnosis, Treatment, Prevention, and Cure of Autoimmune Diseases
- The plan calls for increased investment in basic science to better understand the mechanisms that drive autoimmune diseases, including the triggers of disease onset, and symptoms.
- It emphasizes the need for improved research models, and the integration of genetic, environmental, and biological data to identify risk factors and potential therapeutic targets.
2. Promote Research Focused on Enhancing Health for People Living with and At Risk of Autoimmune Diseases
- Recognizing the challenges of delayed diagnosis and limited treatment options, the plan prioritizes research into early detection, novel diagnostics, and more effective, accessible therapies.
- There is a strong focus on the preclinical phase of autoimmunity, with the goal of identifying and intervening before irreversible tissue damage occurs.
3. Support Research to Understand the Full Complexity of Autoimmune Diseases
- The plan highlights the importance of studying diverse patient cohorts over time to understand disease progression, complications, and the impact of co-occurring conditions.
- It calls for research that will facilitate clinical trial designs for autoimmune diseases, which will enable more meaningful recruitment and actionable results from clinical trials.
4. Build and Maintain Capacity for Autoimmune Disease Research
- To ensure sustained progress, the plan outlines the need for expanded research infrastructure, integrated clinical trial networks, and advanced data science tools.
- It also addresses the critical shortage of specialists and researchers in the field, calling for new training and workforce development initiatives.
5. Build and Strengthen Partnerships and Interdisciplinary Collaboration Across the Autoimmune Disease Community
- The plan recognizes that progress depends on collaboration across the autoimmune disease community—patients, advocates, researchers, clinicians, industry, and government.
- It commits to ongoing engagement with patient organizations, ensuring that research remains person-centered and responsive to community needs.
What Does This Mean for the Sjögren’s Disease Community?
With the release of the strategic plan, OADR furthers the Foundation’s efforts to formalize the renaming of the disease to “Sjögren’s disease,” dropping “syndrome” from its name. Sjögren’s disease is a serious and systemic disease, and we’ve been working closely with OADR and NIH who have already been adopting the new name, to help the public and health practitioners better understand and recognize the symptoms of Sjögren’s disease.
We hope this change and recognition of the systemic nature of Sjögren’s disease will help unlock new opportunities for research across NIH institutes and centers in the future. The establishment of OADR and the release of this coordinated strategic plan also aligns this Administration’s efforts to confront chronic diseases, including conditions that greatly impact large communities like Sjögren’s. The Foundation is committed to working with Administration partners and research institutions to advance research into Sjögren’s disease and other chronic conditions.
What Are the Next Steps?
With the release of the strategic plan, NIH will begin implementing its recommendations, engaging with key institutes and centers across the research agency, guided by ongoing input from the autoimmune disease community. The Office of Autoimmune Disease Research will coordinate these efforts, monitor progress, and identify research and data needed to advance this strategic plan.
The Sjögren’s Foundation will continue to be an active partner in this process—advocating for increased research funding for Sjögren’s and autoimmune diseases at NIH, for grants to institutions that have strong Sjögren’s research programs, and ensuring that the needs of our community are addressed at every stage. This plan reinforces the critical and irreplaceable role of the NIH in driving scientific discoveries and medical breakthroughs.
We encourage all members to stay engaged and be on the lookout for more updates on our advocacy efforts this fall.
In late July, the National Institutes of Health (NIH) released its first-ever NIH-Wide Strategic Plan for Autoimmune Disease Research, marking a significant step forward in the national effort to enhance and coordinate federal research on autoimmune diseases. This landmark document represents a new era of coordinated, multidisciplinary research aimed at accelerating discovery, improving diagnostics and treatments, and ultimately enhancing the lives of those affected by autoimmune diseases—including Sjögren’s.
The Sjögren’s Foundation has been engaged throughout the creation of the NIH Office of Autoimmune Disease Research and the development of this strategic plan. Our advocacy, input, and partnerships have helped ensure that the voices and needs of Sjögren’s patients and families are included in this national research agenda.
What’s in the NIH Strategic Plan?
The NIH-Wide Strategic Plan for Autoimmune Disease Research is a comprehensive blueprint designed to address the growing crisis of autoimmune diseases in the United States. With up to 50 million Americans living with one or more autoimmune diseases, and more than 140 distinct conditions identified—including Sjögren’s—the need for a unified, robust research strategy has never been greater.
The plan is built around five strategic priorities, each with specific objectives:
1. Accelerate Scientific Discovery in Diagnosis, Treatment, Prevention, and Cure of Autoimmune Diseases
2. Promote Research Focused on Enhancing Health for People Living with and At Risk of Autoimmune Diseases
3. Support Research to Understand the Full Complexity of Autoimmune Diseases
4. Build and Maintain Capacity for Autoimmune Disease Research
5. Build and Strengthen Partnerships and Interdisciplinary Collaboration Across the Autoimmune Disease Community
What Does This Mean for the Sjögren’s Disease Community?
With the release of the strategic plan, OADR furthers the Foundation’s efforts to formalize the renaming of the disease to “Sjögren’s disease,” dropping “syndrome” from its name. Sjögren’s disease is a serious and systemic disease, and we’ve been working closely with OADR and NIH who have already been adopting the new name, to help the public and health practitioners better understand and recognize the symptoms of Sjögren’s disease.
We hope this change and recognition of the systemic nature of Sjögren’s disease will help unlock new opportunities for research across NIH institutes and centers in the future. The establishment of OADR and the release of this coordinated strategic plan also aligns this Administration’s efforts to confront chronic diseases, including conditions that greatly impact large communities like Sjögren’s. The Foundation is committed to working with Administration partners and research institutions to advance research into Sjögren’s disease and other chronic conditions.
What Are the Next Steps?
With the release of the strategic plan, NIH will begin implementing its recommendations, engaging with key institutes and centers across the research agency, guided by ongoing input from the autoimmune disease community. The Office of Autoimmune Disease Research will coordinate these efforts, monitor progress, and identify research and data needed to advance this strategic plan.
The Sjögren’s Foundation will continue to be an active partner in this process—advocating for increased research funding for Sjögren’s and autoimmune diseases at NIH, for grants to institutions that have strong Sjögren’s research programs, and ensuring that the needs of our community are addressed at every stage. This plan reinforces the critical and irreplaceable role of the NIH in driving scientific discoveries and medical breakthroughs.
We encourage all members to stay engaged and be on the lookout for more updates on our advocacy efforts this fall.