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

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

doi:10.1080/21678421.2023.2264922

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

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

Producción científica: Article › revisión exhaustiva

1 Cita (Scopus)

Resumen

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.

Idioma original	English
Páginas (desde-hasta)	211-213
Número de páginas	3
Publicación	Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
Volumen	25
N.º	1-2
DOI	https://doi.org/10.1080/21678421.2023.2264922
Estado	Published - 2024

Nota bibliográfica

Publisher Copyright:
©, This work was authored as part of the Contributor's official duties as an Employee of the United States Government and is therefore a work of the United States Government. In accordance with 17 U.S.C. 105, no copyright protection is available for such works under U.S. Law.

Financiación

This work was supported by Centers for Disease Control and Prevention Foundation. The authors are grateful to those living with ALS who give their valuable time to contribute important health data to researchers. Without their help, these findings, and countless others, would not be possible.

Financiadores
Centers for Disease Control and Prevention Foundation

ASJC Scopus subject areas

Neurology
Clinical Neurology

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10.1080/21678421.2023.2264922

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title = "A brief report on juvenile amyotrophic lateral sclerosis cases in the United States National ALS Registry: 2010–2018",

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.",

keywords = "ALS, amyotrophic lateral sclerosis, juvenile ALS, motor neuron disease",

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note = "Publisher Copyright: {\textcopyright}, This work was authored as part of the Contributor's official duties as an Employee of the United States Government and is therefore a work of the United States Government. In accordance with 17 U.S.C. 105, no copyright protection is available for such works under U.S. Law.",

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doi = "10.1080/21678421.2023.2264922",

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AU - Raymond, Jaime

AU - Berry, Jasmine

AU - Kasarskis, Edward J.

AU - Larson, Theodore

AU - Horton, D. Kevin

AU - Mehta, Paul

N1 - Publisher Copyright: ©, This work was authored as part of the Contributor's official duties as an Employee of the United States Government and is therefore a work of the United States Government. In accordance with 17 U.S.C. 105, no copyright protection is available for such works under U.S. Law.

PY - 2024

Y1 - 2024

N2 - 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.

AB - 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.

KW - ALS

KW - amyotrophic lateral sclerosis

KW - juvenile ALS

KW - motor neuron disease

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

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ASJC Scopus subject areas

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