At any one time, at least 30,000 people in the U.S. are living with amyotrophic lateral sclerosis (ALS), a rapidly progressive, fatal neurological disease affecting individuals, caregivers, at-risk genetic carriers, and others. In 2022, Congress directed the National Institutes of Health to commission a National Academies committee of experts to recommend key actions public, private, and nonprofit sectors should take to make ALS a livable disease within the next 10 years. The resulting report, Living with ALS, focuses on an integrated ALS multidisciplinary care and research system to help facilitate earlier diagnosis and connections to specialty care.

Contents

• The National Academies of SCIENCES • ENGINEERING • MEDICINE
• COMMITTEE ON AMYOTROPHIC LATERAL SCLEROSIS: ACCELERATING TREATMENTS AND IMPROVING QUALITY OF LIFE
• Reviewers
• Acknowledgments
• Acronyms and Abbreviations
• Preface
• Summary
  • NATIONAL ACADEMIES STUDY PROCESS
  • LIVING WITH ALS TODAY
  • BUILDING THE IDEAL ALS CARE DELIVERY SYSTEM
  • ADVANCING ALS RESEARCH AND ACCELERATING THERAPEUTIC DEVELOPMENT
  • PREVENTING ALS
• 1. Introduction and Study Context
  • EPIDEMIOLOGY
  • STUDY TASK
  • THE NATURE OF ALS AND ITS SYMPTOMS
  • STUDY APPROACH AND SCOPE
  • REFERENCES
• 2. Living with ALS Today
  • ABSTRACT
  • MAKING ALS LIVABLE IN 10 YEARS
  • RACIAL INEQUITIES IN ALS DIAGNOSIS, CARE, AND OUTCOMES
  • CONCLUDING COMMENTS
  • REFERENCES
• 3. Making ALS Livable in the Near Term
  • ABSTRACT
  • INSURANCE CHALLENGES
  • INADEQUATE HOME SERVICES
  • HIGH OUT-OF-POCKET COSTS
  • SUPPORTING CAREGIVERS
  • RESPIRATORY MANAGEMENT OF ALS
  • REFERENCES
• 4. Creating a Sustainable and Accessible ALS Clinical Care and Research System
  • ABSTRACT
  • ALS MULTIDISCIPLINARY CARE
  • INTEGRATING CLINICAL RESEARCH INTO THE ALS CARE DELIVERY NETWORK
  • BUILDING THE IDEAL ALS CARE DELIVERY SYSTEM
  • ALS CARE SYSTEM CHALLENGES
  • REFERENCES
• 5. Advancing ALS Research and Accelerating Therapeutic Development
  • ABSTRACT
  • ALS DRUG DEVELOPMENT THROUGH THE YEARS
  • ALS CLINICAL TRIALS AND NATURAL HISTORY STUDIES
  • DEVELOPING ALS BIOMARKERS AND OTHER CLINICAL ENDPOINTS TO SERVE AS INDICATORS OF DRUG EFFICACY
  • TRADE-OFFS IN ALS DRUG DEVELOPMENT AND APPROVAL
  • ESTABLISHING A COMPREHENSIVE ALS REGISTRY
  • NEW AND EMERGING NONPHARMACOLOGICAL TECHNOLOGIES
  • REFERENCES
• 6. Preventing ALS
  • ABSTRACT
  • IDENTIFYING AT-RISK GENETIC CARRIERS
  • NONGENETIC FACTORS AND PREVENTION
  • REFERENCES
• A. Public Session Agendas
• B. Biographical Sketches of Committee Members and Staff
• C. Disclosure of Unavoidable Conflicts of Interest

Suggested citation:

National Academies of Sciences, Engineering, and Medicine. 2024. Living with ALS. Washington, DC: The National Academies Press. https://doi.org/10.17226/27739.

Digital Object Identifier: https://doi.org/10.17226/27739

This publication is 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.

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