Priorities and Recommendations to Make ALS a Livable Disease Emanating from the 2024 National Academies of Sciences, Engineering, and Medicine Report Living with ALS
Ileana M. Howard MD, Suma Babu MBBS, MPH, Chelsey Carter PhD, MPH, Stacey A. Sakowski PhD, Jerome E. Kurent MD, MS, MPH, Merit E. Cudkowicz MD, MSC, Eva L. Feldman MD, PhD
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引用次数: 0
Abstract
Amyotrophic lateral sclerosis (ALS) is a relentless, fatal neurodegenerative disease. The progressive loss of voluntary muscle function, diagnostic delays, lack of effective treatments, and challenges accessing multidisciplinary care and resources have tremendous impact on quality of life. The congressionally directed ALS committee of the National Academies of Science, Engineering, and Medicine, in their 2024 report “Living with ALS,” recommends critical actions for specific United States stakeholders to make ALS a livable disease over the next decade. This review summarizes the context and recommendations of the report. Advocacy efforts are critical to make these recommendations a reality for the ALS community. ANN NEUROL 2024;96:1035–1039
美国国家科学、工程和医学研究院 2024 年报告《与 ALS 共存》中提出的使 ALS 成为一种可治愈疾病的优先事项和建议。
肌萎缩侧索硬化症（ALS）是一种无情的、致命的神经退行性疾病。肌肉自主功能的逐渐丧失、诊断延误、缺乏有效的治疗方法，以及在获得多学科护理和资源方面的挑战，都对患者的生活质量产生了巨大影响。由国会指导的美国国家科学院、工程院和医学院 ALS 委员会在其 2024 年报告《与 ALS 共存》中，建议美国特定利益相关方在未来十年采取关键行动，使 ALS 成为一种宜居疾病。本综述总结了报告的背景和建议。要使这些建议成为 ALS 社区的现实，宣传工作至关重要。ann neurol 2024.
期刊介绍：
Annals of Neurology publishes original articles with potential for high impact in understanding the pathogenesis, clinical and laboratory features, diagnosis, treatment, outcomes and science underlying diseases of the human nervous system. Articles should ideally be of broad interest to the academic neurological community rather than solely to subspecialists in a particular field. Studies involving experimental model system, including those in cell and organ cultures and animals, of direct translational relevance to the understanding of neurological disease are also encouraged.
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