National Academies Press: OpenBook

Selected Immune Disorders and Disability (2022)

Chapter:Front Matter

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×

Selected
Immune Disorders
and Disability

Committee on Selected Immune Disorders and Disability

Board on Health Care Services

Health and Medicine Division

A Consensus Study Report of

images

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

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×

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

This activity was supported by a contract between the National Academy of Sciences and the Social Security Administration (Contract No. 28321318D00060015). 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: 978-0-309-68949-6
International Standard Book Number: 0-309-68949-X
Digital Object Identifier: https://doi.org/10.17226/26595
Library of Congress Control Number: 2022943145

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. Selected immune disorders and disability. Washington, DC: The National Academies Press. https://doi.org/10.17226/26595.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×

Image

The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private nongovernment 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.

The National Academy of Engineering was established in 1964 under the charter of the National Academy of Sciences to bring the practices of engineering to advising the nation. Members are elected by their peers for extraordinary contributions to engineering. Dr. John L. Anderson is president.

The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president.

The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public-policy decisions. The National Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine.

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. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×

Image

Consensus Study Reports published by the National Academies of Sciences, Engineering, and Medicine document the evidence-based consensus on studies’ statements of task by committees of experts. Reports typically include findings, conclusions, and recommendations based on information gathered by the committees and the committees’ deliberations. Each report has been subjected to a rigorous and independent peer-review process and represents the position of the National Academies on its statement of task.

Proceedings published by the National Academies of Sciences, Engineering, and Medicine chronicle the presentations and discussions at workshops, symposia, or other events 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. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×

COMMITTEE ON SELECTED IMMUNE DISORDERS AND DISABILITY

JUDITH GREEN-McKENZIE (Chair), Professor of Medicine and Executive Director for Health, Safety and Environment, Johns Hopkins Health System and Johns Hopkins University

PHILIP ARMOUR, Senior Economist and Professor of Policy Analysis, Pardee RAND Graduate School

MATTHEW L. BASIAGA, Assistant Professor of Pediatrics, Mayo Clinic Alix School of Medicine

JOAN M. BATHON, Professor of Medicine and Chief, Division of Rheumatology, Columbia University Irving Medical Center/New York Presbyterian Hospital

LISA CHRISTOPHER-STINE, Associate Professor of Medicine and Neurology and Director of the Johns Hopkins Myositis Center, Johns Hopkins University School of Medicine

SHARON DOWELL, Associate Professor of Medicine, Division of Rheumatology, Howard University College of Medicine

AMANDA BETH FEINSTEIN, Clinical Assistant Professor, Department of Anesthesiology, Perioperative, and Pain Medicine, Stanford University School of Medicine

ANNETTE L. FITZPATRICK, Research Professor, Departments of Family Medicine, Epidemiology, and Global Health, University of Washington School of Medicine and Public Health

PATRICIA KATZ, Professor of Medicine and Health Policy, Division of Rheumatology, University of California San Francisco

KAREN BRANDT ONEL, Professor of Clinical Pediatrics and Chief, Division of Pediatric Rheumatology, Hospital for Special Surgery, Weill Cornell Medicine

AMI A. SHAH, Associate Professor of Medicine and Associate Director, Division of Rheumatology, Co-Director, Johns Hopkins Scleroderma Center, Johns Hopkins University School of Medicine

Consultant

NANETTE K. WENGER, Professor of Medicine Emeritus, Division of Cardiology, Emory University School of Medicine

Study Staff

CAROLYN FULCO, Scholar

BERNICE CHU, Program Officer

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×

JOSEPH GOODMAN, Senior Program Assistant

BLAKE REICHMUTH, Associate Program Officer

SHARYL NASS, Senior Director, Board on Health Care Services

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×

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:

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 CYNTHIA D. MULROW, University of Texas Health Science Center, and B. NED

Page viii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×

CALONGE, Colorado School of Public Health. 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. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×

Acronyms and Abbreviations

Ab autoantibody
ACA anti-centromere antibody
ACE angiotensin-converting enzyme
ACLE acute cutaneous lupus erythematosus
ACPA anti-citrullinated protein antibody
ACR American College of Rheumatology
AECG American–European Consensus Group
ANA anti-nuclear antibody
anti-MDA5 anti-melanoma differentiation-association protein 5
anti-Ro anti-rhodopsin
AOSD adult-onset Stills’ disease
APLA antiphospholipid antibody
APLS antiphospholipid syndrome
ARB angiotensin II receptor blocker
ARS anti-aminoacyl tRNA synthetase
ASTIS trial Autologous Stem Cell Transplantation Internal Scleroderma
BAFF B cell activating factor
bDMARD biologic disease-modifying anti-rheumatic drug
BILAG-2004 British Isles Lupus Assessment Group–2004
CADM clinically amyopathic dermatomyositis
CARRA Childhood Arthritis and Rheumatology Research Alliance
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×
CCLE chronic cutaneous lupus erythematosus
CDC Centers for Disease Control and Prevention
CDR continuing disability review
CHAQ Children’s Health Assessment Questionnaire
CK creatine kinase
CMS Centers for Medicare & Medicaid Services
CNS central nervous system
CREST syndrome calcinosis, Raynaud’s phenomenon, esophageal dysmotility, sclerodactyly, telangiectasia
CRP C-reactive protein
cSLE childhood-onset systemic lupus erythematosus
csDMARD conventional synthetic disease-modifying anti-rheumatic drug
CT computed tomography
CTD-PAH connective tissue disorders–pulmonary arterial hypertension
DALY disability-adjusted life-year
DAS28 Disease Activity Score 28
dcSSc diffuse cutaneous systemic sclerosis
DHEA dehydropiandrosterone
DLE discoid lupus erythematosus
DM dermatomyositis
DMARD disease-modifying anti-rheumatic drug
dsDNA double-stranded DNA
DU digital ulcer
EDTA European Dialysis and Transplant Association
EMG electromyography
ERA European Renal Association
ERA enthesitis-related arthritis
ESR erythrocyte sedimentation rate
ESRD end stage renal disease
ESSDAI EULAR Sjögren’s Syndrome Disease Activity Index
ESSPRI EULAR Sjögrens Syndrome Patient Reported Index
EULAR European Alliance of Associations for Rheumatology
EUSTAR European Scleroderma Trials and Research
FDA U.S. Food and Drug Administration
FI2 functional index 2 test
FVC forced vital capacity
GAD-7 General Anxiety Disorder-7
Page xiii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×
GAVE gastric antral vascular ectasia
GC glucocorticoid
G-CSF granulocyte colony stimulating factor
GI gastrointestinal
GRAPPA Group for Research and Assessment in Psoriasis and Psoriatic Arthritis
GRCS global rank composite score
HAQ Health Assessment Questionnaire
HAQ-DI Health Assessment Questionnaire–Disability Index
HCQ hydroxychloroquine
HFrEF reduced ejection fraction
HIV human immunodeficiency virus
IBD inflammatory bowel disease
IBM inclusion-body myositis
ICF International Classification of Functioning
IIM idiopathic inflammatory myopathy
IL interleukin
ILAR International League of Associations for Rheumatology
ILD interstitial lung disease
IMACS International Myositis Assessment and Clinical Studies Group
IMNM immune-mediated necrotizing myopathy
IV intravenous
IVIG intravenous immunoglobulin
JADI Juvenile Arthritis Damage Index
JAK janus kinase
JDM juvenile dermatomyositis
JIA juvenile idiopathic arthritis
JIIM juvenile idiopathic inflammatory myopathy
JKI janus kinase inhibitor
JPM juvenile polymyositis
lcSSc limited cutaneous systemic sclerosis
LN lupus nephritis
LV left ventricular
MAA myositis-associated antibody
MAS macrophage activation syndrome
MDA melanoma differentiation-associated gene
MDA-5 anti-melanoma differentiation associated gene-5
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×
MIPS Merit-Based Incentive Payment System
MMF mycophenolate mofetil
MMT manual muscle test
MRI magnetic resonance imaging
mRSS modified Rodnan skin score
MSA myositis-specific autoantibody
NAM necrotizing autoimmune myopathy
NIH National Institutes of Health
NPF National Psoriasis Foundation
NSAID nonsteroidal anti-inflammatory drug
NXP nuclear matrix protein
NXP-2 nuclear matrix protein-2
OMERACT Outcome Measures in Rheumatoid Arthritis Clinical Trials
PAH pulmonary arterial hypertension
PDE-5 phosphodiesterase-5
PH pulmonary hypertension
PhGA Physician Global Assessment
PHQ-9 Patient Health Questionnaire-9
PM polymyositis
PsA psoriatic arthritis
PsARC Psoriatic Arthritis Response Criteria
PsJIA juvenile psoriatic arthritis
pSS primary Sjögren’s syndrome
PT/OT physical therapy and occupational therapy
RA rheumatoid arthritis
RCT randomized controlled trial
REVEAL Registry to Evaluate Early and Long-term PAH Disease Management
RF rheumatoid factor
RFC residual functional capacity
RNP ribonucleoprotein
RP-ILD rapidly progressive interstitial lung disease
SAE small ubiquitin-like modifier-activating enzyme
SCLE subacute cutaneous lupus erythematosus
SHAQ Scleroderma Health Assessment Questionnaire
SHAQ-DI Scleroderma Health Assessment Questionnaire–Disability Index
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×
SLAM-R Revised Systemic Lupus Activity Measure
SLE systemic lupus erythematosus
SLEDAI-2K Systemic Lupus Erythematosus Disease Activity Index-2K
SLICC System Lupus Erythematosus International Collaborating Clinics Group
SLS I Scleroderma Lung Study I
SLS II Scleroderma Lung Study II
SMS Systemic Manifestation Score
SPIN Scleroderma Patient-Centered Intervention
SRC scleroderma renal crisis
SS Sjögren’s syndrome
SSA Social Security Administration
SSc systemic sclerosis
SSDI Social Security Disability Insurance
SSI Supplemental Security Income
SSRI selective serotonin reuptake inhibitor
sSS secondary Sjögren’s syndrome
SWSF stimulated whole salivary flow rate
T2T treat-to-target
TIF transcription intermediary factor
TNF tumor necrosis factor
UWSF unstimulated whole salivary flow rate
VLA valued life activity
WHO World Health Organization
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×

This page intentionally left blank.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×
PageR1
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×
PageR2
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×
PageR3
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×
PageR4
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×
PageR5
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×
PageR6
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×
PageR7
Page viii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×
PageR8
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×
PageR9
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×
PageR10
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×
PageR11
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×
PageR12
Page xiii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×
PageR13
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×
PageR14
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×
PageR15
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2022. Selected Immune Disorders and Disability. Washington, DC: The National Academies Press. doi: 10.17226/26595.
×
PageR16
Next: Summary »
Selected Immune Disorders and Disability Get This Book
×
Buy Paperback | $35.00
MyNAP members save 10% online.
Login or Register to save!
Download Free PDF

The U.S. Social Security Administration (SSA) administers the Social Security Disability Insurance program and the Supplemental Security Income program. As part of their process, immune system disorders are evaluated under Listing of Impairments 14.00 for adults and 114.00 for children. At the request of the SSA, the National Academies of Sciences, Engineering, and Medicine assembled a committee to review selected conditions related to the immune system. In particular, the SSA was interested in the current status of the diagnosis, treatment, and prognosis of immune system disorders including systemic lupus erythematosus (SLE), scleroderma, polymyositis, Sjogren's syndrome/disease, and inflammatory arthritis.

This report provides an overview of the current status of the diagnosis, treatment, and prognosis of these immune system disorders in the U.S. population and the relative levels of functional limitation typically associated with them, common treatments, and other considerations.

  1. ×

    Welcome to OpenBook!

    You're looking at OpenBook, NAP.edu's online reading room since 1999. Based on feedback from you, our users, we've made some improvements that make it easier than ever to read thousands of publications on our website.

    Do you want to take a quick tour of the OpenBook's features?

    No Thanks Take a Tour »
  2. ×

    Show this book's table of contents, where you can jump to any chapter by name.

    « Back Next »
  3. ×

    ...or use these buttons to go back to the previous chapter or skip to the next one.

    « Back Next »
  4. ×

    Jump up to the previous page or down to the next one. Also, you can type in a page number and press Enter to go directly to that page in the book.

    « Back Next »
  5. ×

    Switch between the Original Pages, where you can read the report as it appeared in print, and Text Pages for the web version, where you can highlight and search the text.

    « Back Next »
  6. ×

    To search the entire text of this book, type in your search term here and press Enter.

    « Back Next »
  7. ×

    Share a link to this book page on your preferred social network or via email.

    « Back Next »
  8. ×

    View our suggested citation for this chapter.

    « Back Next »
  9. ×

    Ready to take your reading offline? Click here to buy this book in print or download it as a free PDF, if available.

    « Back Next »
Stay Connected!