Sociodemographic and clinical characteristics and access to health care in patients with spinal muscular atrophy in Argentina

The FAME registry gathers the majority of patients with SMA in Argentina. From it, the clinical, sociodemographic and access to treatment characteristics were analyzed in 322 patients (range 8 months-61 years) included from 2008 to 2021. Important data were obtained for the planning of medical care...

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Autores principales: Vazquez, Gabriel Adolfo, Nasif, Salomé, Marciano, Sebastián, Pagotto, Vanina
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2023
Materias:
Neurology
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10516182/
https://www.ncbi.nlm.nih.gov/pubmed/37745665
http://dx.doi.org/10.3389/fneur.2023.1179692
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author Vazquez, Gabriel Adolfo
Nasif, Salomé
Marciano, Sebastián
Pagotto, Vanina
author_facet Vazquez, Gabriel Adolfo
Nasif, Salomé
Marciano, Sebastián
Pagotto, Vanina
author_sort Vazquez, Gabriel Adolfo
collection PubMed
description The FAME registry gathers the majority of patients with SMA in Argentina. From it, the clinical, sociodemographic and access to treatment characteristics were analyzed in 322 patients (range 8 months-61 years) included from 2008 to 2021. Important data were obtained for the planning of medical care of these patients such as: similar distribution of patient care in public and private hospitals, time gap between onset of symptoms and diagnoses, low level of completion of SMN2 copy count, estimate of 16 new diagnoses per year between 2014 and 2018, and 68% of patient in specific pharmacological treatment.
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spelling pubmed-105161822023-09-23 Sociodemographic and clinical characteristics and access to health care in patients with spinal muscular atrophy in Argentina Vazquez, Gabriel Adolfo Nasif, Salomé Marciano, Sebastián Pagotto, Vanina Front Neurol Neurology The FAME registry gathers the majority of patients with SMA in Argentina. From it, the clinical, sociodemographic and access to treatment characteristics were analyzed in 322 patients (range 8 months-61 years) included from 2008 to 2021. Important data were obtained for the planning of medical care of these patients such as: similar distribution of patient care in public and private hospitals, time gap between onset of symptoms and diagnoses, low level of completion of SMN2 copy count, estimate of 16 new diagnoses per year between 2014 and 2018, and 68% of patient in specific pharmacological treatment. Frontiers Media S.A. 2023-09-07 /pmc/articles/PMC10516182/ /pubmed/37745665 http://dx.doi.org/10.3389/fneur.2023.1179692 Text en Copyright © 2023 Vazquez, Nasif, Marciano and Pagotto. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Neurology
Vazquez, Gabriel Adolfo
Nasif, Salomé
Marciano, Sebastián
Pagotto, Vanina
Sociodemographic and clinical characteristics and access to health care in patients with spinal muscular atrophy in Argentina
title Sociodemographic and clinical characteristics and access to health care in patients with spinal muscular atrophy in Argentina
title_full Sociodemographic and clinical characteristics and access to health care in patients with spinal muscular atrophy in Argentina
title_fullStr Sociodemographic and clinical characteristics and access to health care in patients with spinal muscular atrophy in Argentina
title_full_unstemmed Sociodemographic and clinical characteristics and access to health care in patients with spinal muscular atrophy in Argentina
title_short Sociodemographic and clinical characteristics and access to health care in patients with spinal muscular atrophy in Argentina
title_sort sociodemographic and clinical characteristics and access to health care in patients with spinal muscular atrophy in argentina
topic Neurology
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10516182/
https://www.ncbi.nlm.nih.gov/pubmed/37745665
http://dx.doi.org/10.3389/fneur.2023.1179692
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