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.
| Original language | English |
|---|---|
| Pages (from-to) | 211-213 |
| Number of pages | 3 |
| Journal | Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration |
| Volume | 25 |
| Issue number | 1-2 |
| DOIs | |
| State | Published - 2024 |
Bibliographical note
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.
Funding
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.
| Funders | Funder number |
|---|---|
| Centers for Disease Control and Prevention Foundation |
Keywords
- ALS
- amyotrophic lateral sclerosis
- juvenile ALS
- motor neuron disease
ASJC Scopus subject areas
- Neurology
- Clinical Neurology