Cargando…

National registry for amyotrophic lateral sclerosis: a systematic review for structuring population registries of motor neuron diseases

BACKGROUND: This article comprises a systematic review of the literature that aims at researching and analyzing the frequently applied guidelines for structuring national databases of epidemiological surveillance for motor neuron diseases, especially Amyotrophic Lateral Sclerosis (ALS). METHODS: We...

Descripción completa

Detalles Bibliográficos
Autores principales:	Barbalho, Ingridy, Valentim, Ricardo, Júnior, Mário Dourado, Barros, Daniele, Júnior, Hércules Pedrosa, Fernandes, Felipe, Teixeira, César, Lima, Thaísa, Paiva, Jailton, Nagem, Danilo
Formato:	Online Artículo Texto
Lenguaje:	English
Publicado:	BioMed Central 2021
Materias:	Research Article
Acceso en línea:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8259351/ https://www.ncbi.nlm.nih.gov/pubmed/34229610 http://dx.doi.org/10.1186/s12883-021-02298-2

Ejemplares similares

Digital health solution for monitoring and surveillance of Amyotrophic Lateral Sclerosis in Brazil
por: Barbalho, Ingridy M. P., et al.
Publicado: (2023)

Biomedical signals and machine learning in amyotrophic lateral sclerosis: a systematic review
por: Fernandes, Felipe, et al.
Publicado: (2021)

Digital Alternative Communication for Individuals with Amyotrophic Lateral Sclerosis: What We Have
por: Fernandes, Felipe, et al.
Publicado: (2023)

Impact of the National Amyotrophic Lateral Sclerosis Registry: Analysis of Registry‐funded Research
por: Rechtman, Lindsay, et al.
Publicado: (2022)

Electronic health records in Brazil: Prospects and technological challenges
por: Barbalho, Ingridy M. P., et al.
Publicado: (2022)

Telehealth for amyotrophic lateral sclerosis in a multidisciplinary service in a Brazilian reference center
por: Fidelix, Emanuela Coriolano, et al.
Publicado: (2023)

Implementation of a population-based epidemiological rare disease registry: study protocol of the amyotrophic lateral sclerosis (ALS) - registry Swabia
por: Nagel, Gabriele, et al.
Publicado: (2013)

Association of Copper Status with Lipid Profile and Functional Status in Patients with Amyotrophic Lateral Sclerosis
por: Barros, Acsa Nara A. B., et al.
Publicado: (2018)

The Heritability of Amyotrophic Lateral Sclerosis in a Clinically Ascertained United States Research Registry
por: Wingo, Thomas S., et al.
Publicado: (2011)

A new method for estimating under-recruitment of a patient registry: a case study with the Ohio Registry of Amyotrophic Lateral Sclerosis
por: Li, Meifang, et al.
Publicado: (2022)

Preliminary Results of National Amyotrophic Lateral Sclerosis (ALS) Registry Risk Factor Survey Data
por: Bryan, Leah, et al.
Publicado: (2016)

Multicentre, prospective registry study of amyotrophic lateral sclerosis in mainland China (CHALSR): study protocol
por: He, Ji, et al.
Publicado: (2020)

Osteoporosis screening using machine learning and electromagnetic waves
por: Albuquerque, Gabriela A., et al.
Publicado: (2023)

Incidence and Geographical Variation of Amyotrophic Lateral Sclerosis (ALS) in Southern Germany – Completeness of the ALS Registry Swabia
por: Uenal, Hatice, et al.
Publicado: (2014)

CDC Grand Rounds: National Amyotrophic Lateral Sclerosis (ALS) Registry Impact, Challenges, and Future Directions
por: Mehta, Paul, et al.
Publicado: (2017)

Association of blood lipids with onset and prognosis of amyotrophic lateral sclerosis: results from the ALS Swabia registry
por: Michels, Sebastian, et al.
Publicado: (2023)

Multiparametric Analysis of Sniff Nasal Inspiratory Pressure Test in Middle Stage Amyotrophic Lateral Sclerosis
por: Sarmento, Antonio, et al.
Publicado: (2018)

Data Report: “Health care of Persons Deprived of Liberty” Course From Brazil's Unified Health System Virtual Learning Environment
por: Valentim, Janaína, et al.
Publicado: (2021)

Dietary Intake of Micronutrients and Disease Severity in Patients with Amyotrophic Lateral Sclerosis
por: Barros, Acsa Nara de Araújo Brito, et al.
Publicado: (2023)

Physical therapy for the management of motor symptoms in amyotrophic lateral sclerosis: protocol for a systematic review
por: Silva, Stephano Tomaz, et al.
Publicado: (2022)

Molecular Motor Proteins and Amyotrophic Lateral Sclerosis
por: Soo, Kai Y, et al.
Publicado: (2011)

Factors predicting one-year mortality in amyotrophic lateral sclerosis patients – data from a population-based registry
por: Wolf, Joachim, et al.
Publicado: (2014)

Adipokines, C-reactive protein and Amyotrophic Lateral Sclerosis – results from a population- based ALS registry in Germany
por: Nagel, Gabriele, et al.
Publicado: (2017)

Definitions, phenomenology, diagnosis, and management of the disorders of laughter and crying in amyotrophic lateral sclerosis (ALS): Consensus from ALS and Motor Neuron Disease Scientific Department of the Brazilian Academy of Neurology
por: Gondim, Francisco de Assis Aquino, et al.
Publicado: (2023)

Noninvasive mechanical ventilation assistance in amyotrophic lateral sclerosis: a systematic review
por: da Cunha-Correia, Carolina, et al.
Publicado: (2023)

Impaired Structural Motor Connectome in Amyotrophic Lateral Sclerosis
por: Verstraete, Esther, et al.
Publicado: (2011)

Amyotrophic lateral sclerosis: a dying motor unit?
por: Piotrkiewicz, Maria, et al.
Publicado: (2013)

Regional motor cortex dysfunction in amyotrophic lateral sclerosis
por: Menon, Parvathi, et al.
Publicado: (2019)

Motor neuron vulnerability and resistance in amyotrophic lateral sclerosis
por: Nijssen, Jik, et al.
Publicado: (2017)

Motor neuron replacement therapy for amyotrophic lateral sclerosis
por: Liu, Bochao, et al.
Publicado: (2022)

Advantages and limitations of national arthroplasty registries. The need for multicenter registries: the Rempro-SBQ()
por: Gomes, Luiz Sérgio Marcelino, et al.
Publicado: (2017)

Clinical characteristics of a large cohort of US participants enrolled in the National Amyotrophic Lateral Sclerosis (ALS) Registry, 2010–2015
por: RAYMOND, JAIME, et al.
Publicado: (2019)

Increasing Patient Self-Enrollment in the National Amyotrophic Lateral Sclerosis Registry: Lessons Learned From a Direct to Provider Campaign
por: Rechtman, Lindsay, et al.
Publicado: (2018)

Computational methods applied to syphilis: where are we, and where are we going?
por: Albuquerque, Gabriela, et al.
Publicado: (2023)

Association of Insulin-like Growth Factor 1 Concentrations with Risk for and Prognosis of Amyotrophic Lateral Sclerosis – Results from the ALS Registry Swabia
por: Nagel, Gabriele, et al.
Publicado: (2020)

Recruitment of Patients With Amyotrophic Lateral Sclerosis for Clinical Trials and Epidemiological Studies: Descriptive Study of the National ALS Registry’s Research Notification Mechanism
por: Mehta, Paul, et al.
Publicado: (2021)

Cystatin C based estimation of chronic kidney disease and amyotrophic lateral sclerosis in the ALS registry Swabia: associated risk and prognostic value
por: Nagel, Gabriele, et al.
Publicado: (2023)

Effects of a self-care educational program via telerehabilitation on quality of life and caregiver burden in amyotrophic lateral sclerosis: a single-blinded randomized clinical trial protocol
por: Gomes de Souza e Silva, Emília Márcia, et al.
Publicado: (2023)

Complement activation at the motor end-plates in amyotrophic lateral sclerosis
por: Bahia El Idrissi, Nawal, et al.
Publicado: (2016)

Nutrient Effects on Motor Neurons and the Risk of Amyotrophic Lateral Sclerosis
por: Goncharova, Polina S., et al.
Publicado: (2021)

Cannot write session to /tmp/vufind_sessions/sess_503id2ef4rus0fb4potaqqbrnm