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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, 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 facilitate coordination of autoimmune disease research across the National Institutes of Health (NIH)
From page 19...
... The 13-member interdisciplinary committee comprises 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 non-profit 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 sclerosis during midlife; however, each of these illnesses can occur at any PREPUBLICATION COPY -- Uncorrected Proofs
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 Study Process and Information Gathering The committee convened virtually ten times, and between these meetings, small groups of committee members participated in virtual meetings or conference calls to advance their work. The committee held three public sessions to gather information from individuals with expertise on topics and subjects of interest to the committee, including panels of representatives of NIH institutes, centers, and offices; experts on autoimmune diseases and autoimmune disease research from academia and diseasefocused organizations; and individuals with autoimmune disease who provided insights into their lived experiences.
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.
From page 30...
... PREPUBLICATION COPY -- Uncorrected Proofs


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