Position of Experts Regarding Follow-Up of Patients with Neuronal Ceroid Lipofuscinosis-2 Disease in Latin America
J. inborn errors metab. screen
;
8: e20200012, 2020. tab, graf
Article
in English
|
LILACS-Express
| LILACS
| ID: biblio-1143187
ABSTRACT
Abstract Given the lack of standardized guidance for follow-up of patients with neuronal ceroid lipofucsinosis-2 disease in Latin-American countries and the heterogeneity of the region, an expert panel was created with the participation of 11 pediatric neurologists from Colombia, Argentina, Brazil and Chile. The aim of the expert panel was to describe a framework for standardized follow-up in patients with neuronal ceroid lipofucsinosis-2 disease, on or off therapy, that could benefit patients and treating physicians alike. Experts made recommendations in the following areas seizures, abnormal movements and ataxia, sleep disorders and pain, cognitive function, visual function, hearing and speech, cardiac function, quality of life, and motor function. Recommendations include the most appropriate tools for use in the Latin-American context and health care systems, and provide feasible follow-up guidance, applicable in public and private healthcare facilities. They take into consideration the availability of clinical assessment resources, tools (scales, questionnaires, paraclinical tests) and access to these tools in Latin-American countries, as well as other regional and local needs defined by the participating experts.
Full text:
Available
Index:
LILACS (Americas)
Type of study:
Practice guideline
Language:
English
Journal:
J. inborn errors metab. screen
Journal subject:
Medicina Cl¡nica
/
Patologia
Year:
2020
Type:
Article
Affiliation country:
Argentina
/
Brazil
/
Chile
/
Colombia
Institution/Affiliation country:
Fundación Hospital de la Misericordia/CO
/
Hospital Italiano de Buenos Aires/AR
/
Hospital Santa Izabel/BR
/
Hospital Universitario Clínica San Rafael/CO
/
Hospital de Niños Pedro de Elizalde/AR
/
Hospital de Niños de Córdoba/AR
/
Hospital de Niños de La Plata/AR
/
Neuro Conexión/CO
/
Universidad de Chile/CL
/
Universidade Estadual do Ceará/BR
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