National Academies Press: OpenBook

Enhancing NIH Research on Autoimmune Disease (2022)

Chapter: Front Matter

Suggested Citation:"Front Matter." 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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ENHANCING
NIH RESEARCH ON
AUTOIMMUNE DISEASE

Committee for the Assessment of NIH Research
on Autoimmune Diseases

Board on Population Health and Public Health Practice

Health and Medicine Division

A Consensus Study Report of

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THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Enhancing NIH Research on Autoimmune Disease. Washington, DC: The National Academies Press. doi: 10.17226/26554.
×

THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001

This activity was funded with federal funds from the National Institutes of Health, U.S. Department of Health and Human Services, Contract/Task Order No. HHSN263201800029I/75N98020F00006. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.

International Standard Book Number-13: 978-0-309-68830-7
International Standard Book Number-10: 0-309-68830-2
Digital Object Identifier: https://doi.org/10.17226/26554
Library of Congress Catalog Number: 2022939055

Additional copies of this publication are available from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu.

Copyright 2022 by the National Academy of Sciences. All rights reserved.

Printed in the United States of America

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.

Suggested Citation:"Front Matter." 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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The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Marcia McNutt is president.

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Learn more about the National Academies of Sciences, Engineering, and Medicine at www.nationalacademies.org.

Suggested Citation:"Front Matter." 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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Consensus Study Reports published by the National Academies of Sciences, Engineering, and Medicine document the evidence-based consensus on the study’s statement of task by an authoring committee of experts. Reports typically include findings, conclusions, and recommendations based on information gathered by the committee and the committee’s deliberations. Each report has been subjected to a rigorous and independent peer-review process and it represents the position of the National Academies on the statement of task.

Proceedings published by the National Academies of Sciences, Engineering, and Medicine chronicle the presentations and discussions at a workshop, symposium, or other event convened by the National Academies. The statements and opinions contained in proceedings are those of the participants and are not endorsed by other participants, the planning committee, or the National Academies.

For information about other products and activities of the National Academies, please visit www.nationalacademies.org/about/whatwedo.

Suggested Citation:"Front Matter." 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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COMMITTEE FOR THE ASSESSMENT OF NIH RESEARCH ON AUTOIMMUNE DISEASES

BERNARD M. ROSOF (Chair), Professor, Department of Medicine, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell

GLINDA S. COOPER, Director of Science and Research, Innocence Project1

DEIDRA C. CREWS, Professor of Medicine, Division of Nephrology, Department of Medicine, Deputy Director, Center for Health Equity, Johns Hopkins University School of Medicine

WILLIAM R. DUNCAN, Vice Provost for Research Emeritus, East Tennessee State University

DELISA FAIRWEATHER, Associate Professor of Medicine and Immunology, Director of Translational Research, Department of Cardiovascular Medicine, Mayo Clinic

SONIA FRIEDMAN, Associate Professor of Medicine, Harvard Medical School; Director of Women’s Health, Crohn’s and Colitis Center, Brigham and Women’s Hospital

LISA I. IEZZONI, Professor of Medicine, Harvard Medical School, Massachusetts General Hospital

ANDREA M. KNIGHT, Associate Professor of Pediatrics, University of Toronto; Staff Physician, Division of Rheumatology, Hospital for Sick Children, Toronto; Adjunct Assistant Professor of Pediatrics, Perelman School of Medicine, University of Pennsylvania; Faculty Scholar, PolicyLab, Children’s Hospital of Philadelphia

SCOTT M. LIEBERMAN, Associate Professor of Pediatrics, Division of Rheumatology, Allergy, and Immunology, Carver College of Medicine, University of Iowa

MICHAEL D. LOCKSHIN, Professor of Medicine, Weill Cornell Medicine, Director, Barbara Volcker Center for Women and Rheumatic Disease, Hospital for Special Surgery

JILL M. NORRIS, Professor and Chair, Department of Epidemiology, Colorado School of Public Health, University of Colorado Anschutz Medical Campus

EMILY C. SOMERS, Professor and Epidemiologist, Departments of Internal Medicine, Environmental Health Sciences and Obstetrics & Gynecology; Michigan Institute for Clinical & Health Research (MICHR) Interdisciplinary Research and Team Science Faculty Lead, University of Michigan Schools of Medicine & Public Health

___________________

1 Director of Science and Research at the Innocence Project until November 2021.

Suggested Citation:"Front Matter." 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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BARBARA G. VICKREY, Professor and System Chair, Department of Neurology, Icahn School of Medicine at Mount Sinai

Study Staff

ROSE MARIE MARTINEZ, Study Director (from July 2021), Senior Board Director

H. AWO OSEI-ANTO, Study Director (until July 2021)

KRISTIN E. WHITE, Associate Program Officer

DARA ROSENBERG, Research Associate (from November 2020)

LEILA MEYMAND, Senior Program Assistant (October 2020–January 2022)

GRACE READING, Senior Program Assistant (from January 2022)

MISRAK DABI, Finance Business Partner

Y. CRYSTI PARK, Administrative Assistant

Consultants

JOSEPH ALPER, Consulting Science Writer

CHRIS BAROUSSE, Consulting Researcher

NANCY DONOVAN, Consulting Advisor

CHRISTINE LAGANA RIORDAN, Senior Director of Research & Evaluation, Ripple Effect

Suggested Citation:"Front Matter." 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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Reviewers

This Consensus Study Report was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published report as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process.

We thank the following individuals for their review of this report:

ANNE E. BURKE, Johns Hopkins University School of Medicine

HERMINE I. BRUNNER, Cincinnati Children’s Hospital Medical Center

DAVID A. HAFLER, Yale University

JUDITH A. JAMES, Oklahoma Medical Research Foundation, University of Oklahoma Health Sciences Center

SUE JINKS-ROBERTSON, Duke University

FREDERICK W. MILLER, National Institutes of Health

GARY W. MILLER, Columbia University Mailman School of Public Health

DAVID S. PISETSKY, Duke University & Durham VA Medical Center

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Suggested Citation:"Front Matter." 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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D. BRENT POLK, University of California San Diego

MARIAN REWERS, Barbara Davis Center for Diabetes, University of Colorado School of Medicine

TERRY J. SMITH, University of Michigan Medical School

ROBERT B. WALLACE, The University of Iowa

Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations of this report nor did they see the final draft before its release. The review of this report was overseen by BETTY A. DIAMOND, The Feinstein Institute for Medical Research, and ALAN I. LESHNER, American Association for the Advancement of Science (AAAS). They were responsible for making certain that an independent examination of this report was carried out in accordance with the standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the authoring committee and the National Academies.

Suggested Citation:"Front Matter." 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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Preface

As a practicing gastroenterologist, I treated patients who had Crohn’s disease and ulcerative colitis. Both are inflammatory bowel diseases (IBD) and among the most common autoimmune diseases. Over the last two decades, we have made progress in diagnosing IBD, but we have not yet identified biomarkers that enable us to screen for it. We have made revolutionary advances in targeting pharmaceutical therapies to manage IBD, but these options are still limited, many patients have refractory disease, and the therapies themselves may have significant side effects. There is currently no cure for IBD, so for much of their lives, patients may be at risk for developing additional autoimmune diseases as well as complications such as cancer, infections, and maternal/fetal complications. During the course of this study, I was also reminded that we do not have reliable U.S. incidence and prevalence data for IBD.

A goal of autoimmune disease research is to empower physicians to more accurately diagnose, treat, minimize, and ideally, cure disease. There is a critical research gap in personalized medicine, for example, the ability to measure a combination of individual genetics, serologies, phenotypes, and biological mechanisms that predict response to a specific therapy. Side effects and eventual failures, over time, of current medications dictate a need for continuing research into disease pathogenesis and candidate therapeutics.

Congressional legislation has often assisted in focusing National Institutes of Health (NIH) efforts to meet urgent demands related to the health

Suggested Citation:"Front Matter." 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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and welfare of U.S. citizens. In 2019 Congress called for NIH to contract with the National Academies of Sciences, Engineering, and Medicine to identify and review NIH’s research efforts in the broad area of autoimmune diseases with a particular emphasis on the risk factors, diagnostic tools, barriers to diagnosis, treatments, and prospects for cure. Given the complexity of autoimmune diseases and the fact that they encompass many conditions, the committee’s expertise included clinicians and researchers in numerous specialties that focus on autoimmune diseases as well as epidemiologists, health disparities researchers, and persons familiar with NIH’s research administration processes.

NIH has conducted research that has contributed significantly to the advances in care of autoimmune disease, and it is important to continue to translate research knowledge into more precise diagnostic criteria and clinical interventions to achieve the best outcomes and benefit the lives of our patients. Progress in medical research requires visionary strategic thinking, the ability to meet constant challenges in disease prevention and therapeutics, new findings in genetics, coordination, and interdisciplinary guidance.

The recommendations of the committee in Chapter 7 are preceded by a thoughtful analysis of Institute and Center (IC) autoimmune disease research activity along with the committee findings and conclusions. The number and complexity of these diseases requires a concerted strategic effort that leverages the many research activities that occur across ICs. The committee identifies opportunities and options for enhancing autoimmune disease research at NIH. The committee’s recommendations provide a basis for developing a strategy with metrics that yield data that can be reviewed periodically. It is our hope that a subsequent review would show advancement in autoimmune disease research and improvements in outcomes.

On behalf of the committee, I would like express our thanks for the responsiveness of NIH’s ICs and Offices in aiding the committee to gather information. A special thanks to Lisa Begg (Office of the Director/Office of Research on Women’s Health), Susan Cooper (National Institute of Allergy and Infectious Diseases [NIAID]), and Ellen Goldmuntz (NIAID) for their guidance and support.

I would also like to thank the committee members for their tremendous commitment and hard work, all the more meaningful in view of increased responsibilities both in their practices and their lives as a result of the pandemic, and the need to meet and work together virtually.

On behalf of the committee, I would like to express our thanks and appreciation to the National Academies leadership and staff: Rose Marie

Suggested Citation:"Front Matter." 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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Martinez, Senior Director of the Board on Population Health and Public Health Practice, and acting Study Director; Kristin White, Associate Program Officer; Dara Rosenberg, Research Associate; and Grace Reading, Senior Program Assistant. I would also like to thank former staff members Awo Osei-Anto, Senior Program Officer and Leila Meymand, Senior Program Assistant for their contributions to the study process.

Bernard M. Rosof, M.D., Chair, Committee on the Assessment of NIH Research on Autoimmune Diseases

Suggested Citation:"Front Matter." 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:"Front Matter." 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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Acknowledgments

The committee and staff are grateful for the support of the National Academies of Sciences, Engineering, and Medicine’s Health and Medicine Division (HMD) staff who contributed to producing this report. The committee and staff thank Tina Seliber, Lauren Shern, Leslie Sim, and Taryn Young in the HMD Executive Office; Anne Marie Houppert, Christopher Lao-Scott, and Rebecca Morgan in the National Academies Research Center; Sadaf Faraz, Devona Overton, and Marguerite Romatelli in the Office of the Chief Communications Officer; Stephanie Miceli in the Office of News and Public Information; Julie Eubank in the Office of Congressional and Government Affairs; and Mandy Enriquez, Thomas Holland, Dempsey Price, and Alejandro Velazquez in the Office of Conference Management.

The committee’s work was enhanced by the systematic analysis of Christine Lagana Riordan and her team from Ripple Effect, as well as the technical advice provided by Nancy Donovan who served as a consultant to the project. The committee thanks Chris Barousse for her assistance in conducting topic modeling of research grants. The committee thanks Joseph Alper for his editorial assistance in the production of this report. The committee also thanks Aimee Mead for her assistance in reviewing the report.

The committee thanks all the speakers and moderators who participated in committee meetings, as well as others who provided information, input, and assistance. They include the following: James M. Anderson, Karyl S. Barron, Lisa Begg, Jane Buckner, Stephanie Burrows, Susan

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Suggested Citation:"Front Matter." 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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Cooper, Mary K. Crow, Cindy Danielson, Sanjoy Dutta, Julia Gichimu, Ellen Goldmuntz, Brian Haugen, Caren Heller, Deborah Hodge, Michael C. Humble, Judith A. James, Calvin Johnson, Daniel Kastner, Alex Keenan, Ruth Kirby, Virginia Ladd, Nicholas LaRocca, Jessica Lobo, Marie Mancini, James McNamara, Sara Myers, John O’Shea, Mark Pedersen, Nishadi Rajapakse, Lisa G. Rider, Judy Riggie, Pamela L. Schwartzberg, Lisa Spain, Yaron Tomer, Ursula Utz, Emily von Scheven, and Victoria P. Werth.

Finally, we give special thanks to the National Institutes of Health for generously funding this project.

Suggested Citation:"Front Matter." 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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Acronyms and Abbreviations

25OHD 25-hydroxyvitamin D
AARDA American Autoimmune Related Diseases Association1
ACE Autoimmunity Centers of Excellence
ACF Administration for Children and Families
ACL Administration for Community Living
ACP American College of Physicians
ACR American College of Rheumatology
AD-ADRD Alzheimer’s Diseases and Alzheimer’s Disease Related Dementias
ADCC NIH Autoimmune Diseases Coordinating Committee
AHRQ Agency for Healthcare Research and Quality
AI artificial intelligence
AIDS acquired immune deficiency syndrome
AIM autoimmune and immune-mediated diseases
AIT autoimmune thyroiditis
ALP alkaline phophatase
ALPS autoimmune lymphoproliferative syndrome
AMA antimitochondrial antibodies
AMP® Accelerating Medicines Partnership®
ANCA antineutrophil cytoplasmic antibodies

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1 In 2021, AARDA changed its name to The Autoimmune Association.

Suggested Citation:"Front Matter." 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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Anti SSA/Ro anti Sjögren’s syndrome related antigen A autoantibodies
Anti SSB/La anti Sjögren’s syndrome related antigen B autoantibodies
APECED autoimmune polyendrocrinopathy candidiasis ectodermal dystrophy
aPL antiphospholipid antibodies
APS antiphospholipid antibody syndrome
APS-ACTION Antiphospholipid Antibody Syndrome Alliance for Clinical Trials and International Networking
AS ankylosing spondylitis
ASBT apical sodium-dependent bile acid transport
ASPE HHS Assistant Secretary for Planning and Evaluation
ATD autoimmune thyroid disease
ATSDR Agency for Toxic Substances and Disease Registry
B&F Buildings and Facilities
BA Budget Authority
BARDA Biomedical Advanced Research and Development Authority
BPA bisphenol A
BRAIN Brain Research through Advancing Innovative Neurotechnologies Initiative
BRIDA BACH2-Related Immunodeficiency and Autoimmunity
CAPS catastrophic antiphospholipid syndrome
CAR chimeric antigen receptor
CARRA Childhood Arthritis and Rheumatology Research Alliance
CC NIH Clinical Center
CD Crohn’s disease
CD40 cluster of differentiation 40
CDC Centers for Disease Control and Prevention
CeD celiac disease
CHOP Children’s Hospital of Philadelphia
CIT Clinical Islet Transplantation Consortium
CMS Centers for Medicare & Medicaid Services
CNS central nervous system
COPD chronic obstructive pulmonary disease
COVID-19 coronavirus disease 2019
CRD Committee RePORTER Datasets
CRS Congressional Research Service
cSLE childhood-onset systemic lupus erythromatosus
Suggested Citation:"Front Matter." 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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CSR Center for Scientific Review
CVD cardiovascular disease
DAIDS Division of AIDS Research
DAISY Diabetes Autoimmunity Study in the Young
DAIT Division of Allergy, Immunology, and Transplantation
DCCT/EDIC Diabetes Control and Complications Trial/Epidemiology of Diabetes Interventions and Complications
DED dry eye disease
DGP deamidated gliadin peptide
DIPP Type 1 Diabetes Prediction and Prevention Study
DNA deoxyribonucleic acid
DOC dental, oral, craniofacial
DPCPSI Division of Program Coordination, Planning, and Strategic Initiatives
EAE experimental autoimmune encephalomyelitis
EAP Expanded Access Program
EBV Epstein-Barr virus
ELISA enzyme-linked immunoassay
EmA immunoflourescent anti-edmysium
EPA Environmental Protection Agency
ERA Electronic Research Administration
ESRD end-stage renal disease
FDA Food and Drug Administration
FGF fibroblast growth factor
FIC Fogarty International Center
FOA funding opportunity announcement
FXR Farnesoid X Receptor
FY fiscal year
GGT gamma-glutamyl transferase
HHS Department of Health and Human Services
HIV human immunodeficiency virus
HLA human leukocyte antigen
HRSA Health Resources and Services Administration
HSS Hospital of Special Surgery
IBD inflammatory bowel disease
IC NIH Institute or Center
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Suggested Citation:"Front Matter." 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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ICD International Classification of Diseases
iEdison Interagency Edison Database
IFNs interferons
Ig immunoglobulin
IHS Indian Health Services
IL interleukin
IMSGC International Multiple Sclerosis Genetics Consortium
IOM Institute of Medicine
IRP National Institutes of Health Intramural Research Program
ISN International Society of Nephrology
ITN Immune Tolerance Network
JAK Janus kinase inhibitor
JIA juvenile idiopathic arthritis
JIF journal impact factor
LDA latent dirichlet allocation
LFA Lupus Foundation for America
LFT liver function tests
LHHS Labor, Health, and Human Services
LFWG Lupus Federal Working Group
MG myasthenia gravis
MGNet Myasthenia Gravis Rare Disease Network
MOG-Antibody myelin oligodendrocyte glycoprotein
MRI magnetic resonance imaging
mRNA messenger ribonucleic acid
MS multiple sclerosis
NAM National Academies of Medicine
NASEM National Academies of Sciences, Engineering, and Medicine
NCAPG National Coalition of Autoimmune Patient Groups
NCATS National Center for Advancing Translational Sciences
NCCIH National Center for Complementary and Integrative Health
NCI National Cancer Institute
NEI National Eye Institute
NHANES National Health and Nutrition Examination Survey
NHGRI National Human Genome Research Institute
NHLBI National Heart, Lung, and Blood Institute
NIA National Institute on Aging
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Suggested Citation:"Front Matter." 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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NIAID National Institute of Allergy and Infectious Diseases
NIAAA National Institute on Alcohol Abuse and Alcoholism
NIADAR National Institute of Autoimmune Disease and Autoimmunity Research
NIAMS National Institute of Allergy and Infectious Diseases
NIBIB National Institute of Biomedical Imaging and Bioengineering
NICHD Eunice Kennedy Shriver National Institute of Child Health and Human Development
NIDA National Institute on Drug Abuse
NIDCD National Institute on Deafness and Other Communications Disorders
NIDCR National Institute of Dental and Craniofacial Research
NIDDK National Institute of Diabetes and Digestive and Kidney Diseases
NIEHS National Institute of Environmental Health Sciences
NIGMS National Institute of General Medical Sciences
NIH National Institutes of Health
NIMH National Institute of Mental Health
NIMHD National Institute on Minority Health and Health Disparities
NINDS National Institute of Neurological Disorders and Stroke
NINR National Institute of Nursing Research
NLM National Library of Medicine
NLP natural language processing
NMSS National Multiple Sclerosis Society
NOD non-obese diabetic
NORD National Organization of Rare Diseases
norUDCA norursodeoxycholic acid
NOSI notice of special interest
NPP National Priorities Partnership
NPSLE neuropsychiatric systemic lupus erythematosus
NQF National Quality Forum
NSAIDs nonsteroidal anti-inflammatory drugs
OAD/AR Office of Autoimmune Disease/Autoimmunity Research
OAR Office of AIDS Research
OBSSR Office of Behavioral and Social Sciences Research
OCA obeticholic acid
OD Office of the Director
OPA Office of Portfolio Analysis
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Suggested Citation:"Front Matter." 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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OS Office of the Secretary
ORWH Office of Research on Women’s Health
PA program announcement
pANCA perinuclear anti-neutrophil cytoplasmic antibody
PBC primary biliary cholangitis (historically: primary biliary cirrhosis)
PPAR peroxisome proliferated activated receptor
PROMIS® Patient-Reported Outcomes Measurement Information System
PROTECT Study Predicting Response to Standardized Pediatric Colitis Therapy
PSC primary sclerosing cholangitis
RA rheumatoid arthritis
RCDC NIH Research, Condition, and Disease Categorization
RCR relative citation ratio
RCT randomized controlled trial
RePORT Research Portfolio Online Reporting Tools
RePORTER NIH Research Portfolio Expenditures and Results system
RF rheumatoid factor
RFA request for applications
RFI request for information
RFP request for proposals
RHYTHM Rheumatoid Arthritis Study of the Myocardium
RNA ribonucleic acid
RPS Renal Pathology Society
SAMHSA Substance Abuse and Mental Health Services Administration
SARS-COV-2 severe acute respiratory syndrome Coronavirus 2
SEER Surveillance, Epidemiology, and End Results
SGMRO Sexual and Gender Minority Research Office
sJIA systemic juvenile idiopathic arthritis
SLE systemic lupus erythematosus
SpA spondyloarthropathy
SPIRES Scientific Publication Information Retrieval and Evaluation System
SRG Scientific Review Group
SRO Scientific Review Officer
SSc systemic sclerosis
Suggested Citation:"Front Matter." 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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ST suppression of tumorigenicity
STTR small business technology transfer
T1D type 1 diabetes
TEDDY The Environmental Determinants of Diabetes in the Young
Th t helper
TLR toll-like receptor
TNF tumor necrosis factor
TPN total parenteral nutrition
TRAPS tumor necrosis factor receptor-associated periodic syndrome
tTG tissue transglutaminase
tTGA tissue transglutaminase autoantibodies
UC ulcerative colitis
UDCA ursodeoxycholic acid
USPTO U.S. Patent and Trade Office
VA Department of Veterans Affairs
VEXAS vacuoles, E1 enzyme, X-linked, autoinflammatory and somatic syndrome
WHO World Health Organization
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Next: Summary »
Enhancing NIH Research on Autoimmune Disease Get This Book
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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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