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1 Introduction
Pages 17-30

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From page 17...
... among other comorbidities and complications. Autoimmune diseases are chronic and lifelong and can cause significant physical and psychosocial impairment, impeding activities of daily living, productivity, and quality of life.
From page 18...
... Autoimmune disease research activities occur across the ICs through both extramural and intramural research activities. In fiscal year 2020, NIH's budget obligations3 were approximately $41.5 billion, of which NIH spent $1.1 1 NIH established the ADCC in 1998 in response to congressional encouragement to facili tate coordination of autoimmune disease research across NIH, federal agencies, professional societies, and patient and advocacy organizations (NIAID, 2021)
From page 19...
... The 13-member interdisciplinary committee consisted of experts in autoimmune diseases, immunology, epidemiology, environmental health, neurology, nephrology, gastroenterology, cardiology, psychiatry, rheumatology, disability, pediatrics, women's health, sex differences research, health disparities research, and research administration. One member of the committee has had multiple sclerosis for years, providing insight into the lived experience of having an autoimmune disease.
From page 20...
... . In addition, the Autoimmune Registry5 and the Autoimmune Association (formerly named American Autoimmune Related 5 The Autoimmune Registry, Inc., is a nonprofit organization that serves as a hub for re search, statistics, and patient data on all autoimmune disease (Autoimmune Registry Inc., 2021)
From page 21...
... The committee acknowledged that given the timeframe it had to conduct its work, it would be unable to examine a large set of autoimmune diseases. As an initial step in selecting a set of diseases, the committee cross-referenced the Autoimmune Association list of diseases with the list of diseases that the Autoimmune Registry designates as having "strong" evidence for being autoimmune diseases.
From page 22...
... : H11071. b RCDC is the NIH Research, Condition, and Disease Categorization system.
From page 23...
... Diseases That Collectively Illustrate the Spectrum of Autoimmune Diseases The committee sought to select diseases that could illustrate the spectrum of autoimmune disease, which is diverse in organ systems affected, disease course, patient population, time of onset, and severity, among other factors. For example, type 1 diabetes is a disease that most often arises in children, adolescents, and young adults, while systemic lupus erythematous usually first manifests in young adulthood, and multiple
From page 24...
... of autoimmune diseases.8 These "child categories" provide added transparency to the public on funding for specific autoimmune diseases. The RePORT website provides public access to a variety of reporting tools, reports, data, and analyses of NIH research activities.
From page 25...
... The committee held public sessions during its first three meetings; Appendix C lists the agendas and presentation topics. In addition to information provided by invited speakers, at the instruction of the committee, National Academies staff interviewed NIH representatives to gather information on approaches NIH uses to advance collaboration on and coordination of autoimmune disease research, both in and outside NIH.
From page 26...
... Chapter 5 provides an overview of NIH autoimmune disease research efforts, and Chapter 6 provides an analysis of funding for the autoimmune diseases the committee focused on. Chapter 7 identifies opportunities for enhancing autoimmune disease research at NIH.
From page 27...
... Bethesda, MD: National Institutes of Health: Autoimmune Diseases Coordinating Committee. Amaro, F., and F
From page 28...
... Paper read at NASEM Committee for the Assessment of NIH Research on Autoimmune Diseases: Meeting 2 (Continuation) , February 1, 2021, Webinar.
From page 29...
... 2000. Autoimmune diseases: A leading cause of death among young and middle-aged women in the United States.


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