A brief report on juvenile amyotrophic lateral sclerosis cases in the United States National ALS Registry: 2010-2018.

Amyotrophic lateral sclerosis & frontotemporal degeneration Pub Date : 2024-02-01 Epub Date: 2024-01-23 DOI:10.1080/21678421.2023.2264922

Jaime Raymond, Jasmine Berry, Edward J Kasarskis, Theodore Larson, D Kevin Horton, Paul Mehta

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Abstract

Juvenile ALS (jALS) is a rare form of ALS, defined as symptom onset before age 25. This report describes the demographic characteristics of confirmed and likely jALS cases in a large cohort of ALS patients ascertained in the National ALS Registry (Registry) from 2010 to 2018. Patients in the Registry must be at least 18 years of age. Of the 44 identified patients, 37.8% were diagnosed at age 24, were more likely to be nonwhite (54.5%), male (79.5%), and live in the Midwest or Northeast regions (54.5%) of the US. Some 68.9% of the jALS cases were received from federal administrative databases, and 16% came from the web portal only. Demographic characteristics for jALS cases in the Registry differed from previous publications examining ALS cases for all adults. More research is needed to better understand risk factors contributing to jALS, which could lead to earlier diagnosis and therapeutic interventions.

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美国国家ALS登记处青少年肌萎缩侧索硬化症病例的简要报告：2010-2018年。

青少年ALS（jALS）是一种罕见的ALS，定义为25岁之前出现症状。本报告描述了2010年至2018年在国家ALS登记处（登记处）确定的一大群ALS患者中确诊和可能的jALS病例的人口统计学特征。登记处的患者必须年满18岁。在44名已确认的患者中，37.8%在24岁时被确诊，更有可能是非白人（54.5%）、男性（79.5%），居住在美国中西部或东北部地区（54.5%）。约68.9%的jALS病例来自联邦行政数据库，16%仅来自门户网站。登记处jALS病例的人口统计学特征与之前研究所有成年人ALS病例时的出版物不同。需要更多的研究来更好地了解导致jALS的风险因素，这可能导致早期诊断和治疗干预。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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Amyotrophic lateral sclerosis & frontotemporal degeneration

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