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。

IF 8.1 1区医学 Q1 CLINICAL NEUROLOGY Annals of Neurology Pub Date : 2024-10-10 DOI:10.1002/ana.27097

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

{"title":"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。","authors":"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","doi":"10.1002/ana.27097","DOIUrl":null,"url":null,"abstract":"<p>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</p>","PeriodicalId":127,"journal":{"name":"Annals of Neurology","volume":"96 6","pages":"1035-1039"},"PeriodicalIF":8.1000,"publicationDate":"2024-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11563851/pdf/","citationCount":"0","resultStr":"{\"title\":\"Priorities and Recommendations to Make ALS a Livable Disease Emanating from the 2024 National Academies of Sciences, Engineering, and Medicine Report Living with ALS\",\"authors\":\"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\",\"doi\":\"10.1002/ana.27097\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p>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</p>\",\"PeriodicalId\":127,\"journal\":{\"name\":\"Annals of Neurology\",\"volume\":\"96 6\",\"pages\":\"1035-1039\"},\"PeriodicalIF\":8.1000,\"publicationDate\":\"2024-10-10\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11563851/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Annals of Neurology\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://onlinelibrary.wiley.com/doi/10.1002/ana.27097\",\"RegionNum\":1,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"CLINICAL NEUROLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Annals of Neurology","FirstCategoryId":"3","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1002/ana.27097","RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}

引用次数: 0

摘要

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.

本文章由计算机程序翻译，如有差异，请以英文原文为准。

摘要图片

查看原文

微信好友朋友圈 QQ好友复制链接

本刊更多论文

Priorities and Recommendations to Make ALS a Livable Disease Emanating from the 2024 National Academies of Sciences, Engineering, and Medicine Report Living with ALS

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

求助全文

通过发布文献求助，成功后即可免费获取论文全文。去求助

来源期刊

Annals of Neurology 医学-临床神经学

CiteScore

18.00

自引率

1.80%

发文量

270

审稿时长

3-8 weeks

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.