Autoimmune diseases occur when the body's immune system malfunctions and mistakenly attacks healthy cells, tissues, and organs. Strong data on the incidence and prevalence of autoimmune diseases are limited, but a 2009 study estimated the prevalence of autoimmune diseases in the U.S. to be 7.6 to 9.4 percent, or 25 to 31 million people today. This estimate, however, includes only 29 autoimmune diseases, and it does not account for increases in prevalence in the last decade. By some counts, there are around 150 autoimmune diseases, which are lifelong chronic illnesses with no known cures. The National Academies of Sciences, Engineering, and Medicine was asked to assess the autoimmune disease research portfolio of the National Institutes of Health (NIH). Enhancing NIH Research on Autoimmune Disease finds that while NIH has made impressive contributions to research on autoimmune diseases, there is an absence of a strategic NIH-wide autoimmune disease research plan and a need for greater coordination across the institutes and centers to optimize opportunities for collaboration. To meet these challenges, this report calls for the creation of an Office of Autoimmune Disease/Autoimmunity Research in the Office of the Director of NIH. The Office could facilitate NIH-wide collaboration, and engage in prioritizing, budgeting, and evaluating research. Enhancing NIH Research on Autoimmune Disease also calls for the establishment of long term systems to collect epidemiologic and surveillance data and long term studies (20+ years) to study disease across the life course. Finally, the report provides an agenda that highlights research needs that crosscut many autoimmune diseases, such as understanding the effect of environmental factors in initiating disease.

Contents

• The National Academies of SCIENCES • ENGINEERING • MEDICINE
• COMMITTEE FOR THE ASSESSMENT OF NIH RESEARCH ON AUTOIMMUNE DISEASES
• Reviewers
• Preface
• Acknowledgments
• Acronyms and Abbreviations
• Summary
  • CHARGE TO THE COMMITTEE
  • COMMITTEE’S APPROACH TO ADDRESSING ITS CHARGE
  • CROSSCUTTING ISSUES IN AUTOIMMUNE DISEASES
  • ANALYSIS OF INSTITUTE AND CENTER AND SPECIFIC AUTOIMMUNE DISEASE RESEARCH ACTIVITY
  • OPPORTUNITIES AND OPTIONS FOR ENHANCING AUTOIMMUNE DISEASE RESEARCH AT NIH
  • CONCLUSION
• 1. Introduction
  • Charge to the Committee
  • Committee’s Approach
  • REFERENCES
• 2. Background on Autoimmune Diseases
  • DEFINING AUTOIMMUNE DISEASES
  • OCCURRENCE AND COURSE OF AUTOIMMUNE DISEASES
  • THE LIFE-COURSE FRAMEWORK AND AUTOIMMUNE DISEASES
  • SUMMARY AND RESEARCH IMPLICATIONS
  • REFERENCES
• 3. Overview of Select Autoimmune Diseases
  • SJÖGREN’S DISEASE
  • SYSTEMIC LUPUS ERYTHEMATOSUS
  • ANTIPHOSPHOLIPID SYNDROME
  • RHEUMATOID ARTHRITIS
  • PSORIASIS
  • INFLAMMATORY BOWEL DISEASE
  • CELIAC DISEASE
  • PRIMARY BILIARY CHOLANGITIS
  • MULTIPLE SCLEROSIS
  • TYPE 1 DIABETES
  • AUTOIMMUNE THYROID DISEASES
  • SUMMARY AND RESEARCH IMPLICATONS
  • REFERENCES
• 4. Crosscutting Issues in Autoimmune Diseases
  • COMMONALITIES ACROSS AUTOIMMUNE DISEASES
  • MAXIMIZING ADVANCES IN TECHNOLOGY
  • SUMMARY AND RESEARCH IMPLICATIONS
  • REFERENCES
• 5. NIH Autoimmune Disease Research Efforts
  • NIH OVERVIEW AND ORGANIZATIONAL STRUCTURE
  • NIH RESEARCH PROCESS
  • CONGRESSIONAL ACTIONS AND NIH AUTOIMMUNE DISEASE RESEARCH
  • CURRENT COORDINATION OF AUTOIMMUNE DISEASE RESEARCH AT NIH
  • SUMMARY
  • REFERENCES
• 6. Analysis of Institute and Center Autoimmune Disease Research Activity
  • CHARACTERISTICS OF RESEARCH ACTIVITIES SUPPORTED BY ICS
  • IC FUNDING OF GRANTS
  • RESEARCH GRANTS BY AUTOIMMUNE DISEASE
  • RESEARCH FOCUS OF FUNDED GRANTS
  • NIH AUTOIMMUNE DISEASE RESEARCH: INDICATORS OF ACCOMPLISHMENTS
  • SUMMARY
  • REFERENCES
• 7. Opportunities and Options for Enhancing Autoimmune Disease Research at NIH
  • PLANNING, COLLABORATION, AND INNOVATION
  • RECOMMENDATIONS
  • REFERENCES
• Appendix A. Committee Member and Staff Biographies
• Appendix B. List of Autoimmune Diseases
• Appendix C. Open Session Agendas
• Appendix D. Epidemiology: Select Diseases
• Appendix E. Mission Statements of NIH’s Institutes and Centers
• Appendix F. NIH Office of Autoimmune Disease Research Act of 1999
• Appendix G. Analysis of the NIH Autoimmune Disease Research Grant Portfolio: Methodology
• Appendix H. Topic Analysis of NIH Autoimmune Disease Research Grant Abstracts

Suggested citation:

National Academies of Sciences, Engineering, and Medicine. 2022. Enhancing NIH research on autoimmune disease. Washington, DC: The National Academies Press. https://doi.org/10.17226/26554.

Digital Object Identifier: https://doi.org/10.17226/26554

Library of Congress Catalog Number: 2022939055

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