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Enhancing NIH Research on Autoimmune Disease (2022)

Chapter:Appendix C: Open Session Agendas

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Suggested Citation:"Appendix C: Open Session Agendas." National Academies of Sciences, Engineering, and Medicine. 2022. Enhancing NIH Research on Autoimmune Disease. Washington, DC: The National Academies Press. doi: 10.17226/26554.
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Suggested Citation:"Appendix C: Open Session Agendas." National Academies of Sciences, Engineering, and Medicine. 2022. Enhancing NIH Research on Autoimmune Disease. Washington, DC: The National Academies Press. doi: 10.17226/26554.
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Suggested Citation:"Appendix C: Open Session Agendas." National Academies of Sciences, Engineering, and Medicine. 2022. Enhancing NIH Research on Autoimmune Disease. Washington, DC: The National Academies Press. doi: 10.17226/26554.
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Suggested Citation:"Appendix C: Open Session Agendas." National Academies of Sciences, Engineering, and Medicine. 2022. Enhancing NIH Research on Autoimmune Disease. Washington, DC: The National Academies Press. doi: 10.17226/26554.
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Suggested Citation:"Appendix C: Open Session Agendas." National Academies of Sciences, Engineering, and Medicine. 2022. Enhancing NIH Research on Autoimmune Disease. Washington, DC: The National Academies Press. doi: 10.17226/26554.
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Suggested Citation:"Appendix C: Open Session Agendas." National Academies of Sciences, Engineering, and Medicine. 2022. Enhancing NIH Research on Autoimmune Disease. Washington, DC: The National Academies Press. doi: 10.17226/26554.
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Appendix C Open Session Agendas Wednesday, November 18, 2020, 1:30 – 4:00 p.m. (ET) Web Conference Open Session Agenda 1:30 – 1:45 Welcome and introductions Bernard Rosof, M.D., Committee Chair, and Committee 1:45 – 2:00 Sponsor charge to the committee Ellen Goldmuntz, M.D., Ph.D., Section Chief, Rheumatologic Autoimmune Disease Section, National Institute of Allergy and Infectious Diseases (NIAID), NIH 2:00 – 2:10 Study background Alex Keenan, Clerk, Subcommittee on Labor, Health and Hu- man Services, Education and Related Agencies, Senate Commit- tee on Appropriations (Minority Staff) 455 PREPUBLICATION COPY—Uncorrected Proofs

456 ENHANCING NIH RESEARCH ON AUTOIMMUNE DISEASE 2:10 – 2:25 Overview of NIH Institutes and Centers and funding structure James McNamara, M.D., Section Chief, Autoimmunity and Mucosal Immunology Branch, Division of Allergy, Immunology and Transplantation, NIAID, NIH 2:25 – 3:05 State of autoimmune diseases in the U.S. Virginia Ladd, Founder, Past President Emerita, Advisor to the President, American Autoimmune Related Diseases Association 3:05 – 3:45 Autoimmune disease research in the U.S. Jane Buckner, M.D., President, Benaroya Research Institute at Virginia Mason 3:45 – 4:00 Q&A 4:00 Adjourn Open Session February 1 – 2, 2021 Full Schedule in Eastern Time Web Conference Meeting Agenda1 February 1, 2021, 1:15 – 4:40p OPEN SESSION 1:15 – 1:30 Open Session Begins 1:30 – 1:45 Welcome and introductions Bernard Rosof, Committee Chair and Committee 1:45 – 2:10 NIH Extramural Grant Review Process – Center for Scientific Review (CSR) Deborah Hodge, Ph.D., Scientific Review Officer, Division of Physiological and Pathological Sciences, CSR, NIH 2:10 – 2:35 Advancing Women’s Health Research at NIH Lisa Begg, Dr.P.H., R.N., Senior Research Program Officer, Office of Research on Women’s Health (ORWH), NIH PREPUBLICATION COPY—Uncorrected Proofs

APPENDIX C 457 2:35 – 2:45 Break 2:45 – 2:55 Panel Discussion: NIH Autoimmune Research across ICs Introductions – Committee Moderator 2:55 – 3:10 James McNamara, M.D., Section Chief, Autoimmunity and Mucosal Immunology Branch, Division of Allergy, Immunology and Transplantation, NIAID, NIH 3:10 – 3:25 Marie Mancini, Ph.D., Program Director, Systemic Autoimmune Disease Biology Program, National Institute of Arthritis and Musculoskeletal and Skin Disease (NIAMS), NIH 3:25 – 3:40 Ursula Utz, Ph.D., Program Director, Neuroimmunology, Autoimmunity, Neurovirology, Multiple Sclerosis, National Institute of Neurological Disorders and Stroke (NINDS), NIH 3:40 – 3:55 Ruth Kirby, Clinical Trials Specialist, National Heart, Lung, and Blood Institute (NHLBI), NIH 3:55 – 4:30 Discussion 4:30 Adjourn February 2, 2021, 1:00 – 3:15p OPEN SESSION 1:00 – 1:05 Welcome Bernard Rosof, Committee Chair 1:05 – 1:30 Advances and Opportunities in Multiple Sclerosis Nicholas LaRocca, Ph.D., Consultant, National Multiple Sclerosis Society (NMSS) 1:30 – 1:55 Advances and Opportunities in Autoimmune Arthritis Emily von Scheven, M.D., M.A.S., Chief of Rheumatology, UCSF Benioff Children’s Hospital PREPUBLICATION COPY—Uncorrected Proofs

458 ENHANCING NIH RESEARCH ON AUTOIMMUNE DISEASE Mary K. Crow, M.D., Director, Autoimmunity and Inflammation Research Program; Co-Director, Mary Kirkland Center for Lupus Research at the HSS Research Institute 1:55 – 2:20 Advances and Opportunities in Type 1 Diabetes Sanjoy Dutta, Ph.D., Vice President for Research, Juvenile Diabetes Research Foundation 2:20 – 2:45 Advances and Opportunities in Inflammatory Bowel Disease Caren Heller, M.D., M.B.A., Chief Scientific Officer, Crohn’s & Colitis Foundation 2:45 – 3:15 Discussions 3:15 Adjourn March 3 – 5, 2021 Public Session Web Conference Meeting Agenda Thursday, March 4, 2021, 1:30 – 5:30 pm (EST) 1:30 Public Session Begins 1:30 – 1:45 Welcome and introductions Bernard Rosof, Committee Chair and Committee PREPUBLICATION COPY—Uncorrected Proofs

APPENDIX C 459 NIH Intramural Research for Autoimmune Diseases 1:45 – 2:10 Daniel Kastner, M.D., Ph.D., Scientific Director, Division of Intramural Research, NHGRI, NIH 2:10 – 2:35 Karyl S. Barron, M.D., Deputy Director, Division of Intramural Research, NIAID, NIH 2:35 – 3:00 Lisa G. Rider, M.D., Acting Head, Environmental Autoimmunity Group, Clinical Research Branch, NIEHS, NIH 3:00 – 3:25 John O’Shea, Ph.D., Scientific Director and Director of Intramural Research Program, NIAMS, NIH 3:25 – 3:40 Break NIH Extramural Research for Autoimmune Diseases Across ICs 3:40 – 4:05 Lisa Spain, Ph.D., Program Director, Division of Diabetes, Endocrinology, and Metabolic Diseases, NIDDK, NIH 4:05 – 4:30 Michael C. Humble, Ph.D., Program Administrator, Genes, Environment and Health Branch, Division of Extramural 4:30 – 4:55 Research and Training, NIEHS, NIH Nishadi Rajapakse, Ph.D., M.H.S., Program Director, Transdisciplinary Collaborative Centers on Precision Medicine, 4:55 – 5:30 Centers of Excellence on Environmental Health Disparities, Division of Scientific Programs, NIMHD, NIH 5:30 Discussion Adjourn PREPUBLICATION COPY—Uncorrected Proofs

460 ENHANCING NIH RESEARCH ON AUTOIMMUNE DISEASE Friday, March 5, 2021, 1:00 – 3:15 pm (EST) 1:00 Public Session Begins 1:00 – 1:05 Welcome Bernard Rosof, Committee Chair 1:05 – 1:30 Advances and Opportunities in Lupus Judith A. James, M.D, Ph.D, Vice President of Clinical Affairs, Member & Chair, Arthritis & Clinical Immunology, Oklahoma Medical Research Foundation; Associate Vice Provost for Clinical and Translational Science, Professor of Medicine, Professor of Pathology, Oklahoma University Health Sciences Center 1:30 -1:55 Advances and Opportunities in Dermatological Autoimmune Diseases Victoria P. Werth, M.D., Professor of Dermatology at the Hospital of the University of Pennsylvania and the Veteran’s Administration (V.A.) Medical Center; Chief, Dermatology, Philadelphia V.A. Hospital 1:55 – 2:20 Advances and Opportunities in Autoimmune Thyroid Diseases Yaron Tomer M.D., Anita and Jack Saltz Chair in Diabetes Research Professor and Chair, Department of Medicine Albert Einstein College of Medicine, Montefiore Medical Center 2:20 – 2:45 Advances and Opportunities in Primary Biliary Cholangitis Mark Pedersen, M.D., Assistant Professor of Medicine, Division of Digestive and Liver Disease, University of Texas Southwestern Medical Center 2:45 – 3:15 Discussion 3:15 Adjourn PREPUBLICATION COPY—Uncorrected Proofs

Next: Appendix D: Epidemiology: Select Diseases »
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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.

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