LAENALS: epidemiological and clinical features of amyotrophic lateral sclerosis in Latin America

Abstract

Objective

The Latin American Epidemiologic study of ALS (LAENALS) aims to gather data on ALS epidemiology, phenotype, and risk factors in Cuba, Chile, and Uruguay, to understand the impact of genetic and environmental factors on ALS.

Methods

A harmonized data collection protocol was generated, and a Latin-American Spanish language Register was constructed. Patient data were collected in Uruguay in 2018, in Chile from 2017 to 2019, and in Cuba between 2017 and 2018. Statistical analysis was performed using SPSS 25.0.0 software. Crude cumulative incidence, standardized incidence, and prevalence were calculated in the population aged 15 years and older.

Results

During 2017-2019, 90 people with ALS from Uruguay (55.6% men), 219 from Chile (54.6% men), and 49 from Cuba (55.1% men) were included. The cumulative crude incidence in 2018 was 1.73/100,000 persons in Uruguay, 1.08 in Chile and 0.195 in Cuba. Crude prevalence in 2018 was 2.19 per 100,000 persons in Uruguay, 1.39 in Chile and 0.55 in Cuba. Mean age at onset was 61.8 ± 11.96 SD years in Uruguay, 61.9 ± 10.4 SD years in Chile, and 60.21 ± 12.45 SD years in Cuba (p = 0.75). Median survival from onset was 32.43 months (21.93 − 42.36) in Uruguay, 24 months (13.5 − 33.5) in Chile, and 29 months (15 − 42.5) in Cuba (p = 0.006).

Conclusions

These preliminary data from LAENALS confirm the lower incidence and prevalence of ALS in counties with admixed populations. The LAENALS database is now open to other Latin American countries for harmonized prospective data collection.

Keywords:

• Amyotrophic lateral sclerosis
• Latin America
• admixed populations
• incidence
• phenotype

Acknowledgements

We would like to thank all the individuals living with ALS who participated in this study. We also want to acknowledge the funding provided by the US National ALS Registry, through the Centers for Disease Control and Prevention (CDC).

Disclosure of interest

AP, CV, CK, PL, TZV, JVGG, GELF, MP, MH, RM, GL and OH report no conflict of interest. BVG was supported by the “Rotación de formación en Neurología en centro extranjero” from Comité ad hoc de Neurólogos Jóvenes (Spanish Society of Neurology).

Data availability statement

The data that support the findings of this study are available on request from the corresponding authors.

Additional information

Funding

This research was funded by the US National ALS Registry, through the Centers for Disease Control and Prevention (CDC).