Latin American Cerebral Palsy Register (LATAM-CPR): study protocol to develop a collaborative register with surveillance of children with cerebral palsy in Latin American countries.

INTRODUCTION: Cerebral palsy (CP) is one of the leading causes of childhood disability globally with a high burden in low-income and middle-income countries (LMICs). Preliminary findings from the global LMIC CP Register (GLM CPR) suggest that the majority of CP in LMICs are due to potentially preventable causes. Such data are lacking in the Latin American region. Generating comparable epidemiological data on CP from this region could enable translational research and services towards early diagnosis and early intervention. We aim to establish a Latin American multicountry network and online data repository of CP called Latin American Cerebral Palsy Register (LATAM-CPR). METHODS AND ANALYSIS: The LATAM-CPR will be modelled after the GLM CPR and will support new and emerging Latin American CP registers following a harmonised protocol adapted from the GLM CPR and piloted in Argentina (ie, Argentine Register of Cerebral Palsy). Both population-based and institution-based surveillance mechanisms will be adopted for registration of children with CP aged less than 18 years to the participating CP registers. The data collection form of the LATAM-CPR will include risk factors, clinical profile, rehabilitation, socioeconomical status of children with CP. Descriptive data on the epidemiology of CP from each participating country will be reported, country-specific and regional data will be compared. ETHICS AND DISSEMINATION: Individual CP registers have applied ethics approval from respective national human research ethics committees (HREC) and/or institutional review boards prior to the establishment and inclusion into the LATAM-CPR. Ethical approval for LATAM-CPR has already been obtained from the HREC in the two countries that started (Argentina and Mexico). Findings will be disseminated and will be made publicly available through peer-reviewed publications, conference presentations and social media communications.

[Classification systems for children and adolescents with cerebral palsy: their use in clinical practice]. / Sistemas de clasificación para niños, niñas y adolescentes con parálisis cerebral: su uso en la práctica clínica.

Introduction: Classification systems are internationally used tools to characterize the functions of children and young people with cerebral palsy (CP), for clinical and research use. The aim of this study was to characterize the different classification systems available and describe the usefulness of each of the classifications, describing their use in clinical practice. Methods: An exhaustive bibliographic revision was performed using the Cochrane Database, MEDLINE, LILACS y Google Scholar databases. The search period was from 1997 to 2019 using key words. Classification systems were included that focused on functions and body structures, considered the International Classification of Functioning, Disability and Health, were validated and in English and Spanish. The quality of the works was assessed according to the AGREE reporting checklist. Results: Six classification systems were found for children with CP regarding their functions and body structures. Each of the systems focuses on a specific function or skill, which are: gross motor function, manual skills, communication functions, eating and drinking skills, MRIs, and visual functions. Main conclusion: All systems have been validated, standardized and used internationally. They serve to more fully describe the functional levels and body structure of children with CP both at the clinical, population and research levels.

Introducción: Los sistemas de clasificaciones son herramientas de uso internacional para caracterizar las funciones de los niños y jóvenes con parálisis cerebral (PC), para el uso clínico y de investigación. El objetivo de este estudio fue caracterizar los distintos sistemas de clasificación disponibles y describir la utilidad de cada una de las clasificaciones, describiendo su uso en la práctica clínica. Métodos: se realizó una búsqueda bibliográfica exhaustiva utilizando las bases de datos de Cochrane Database, MEDLINE, LILACS y Google Académico. El período de búsqueda fue desde 1997 hasta el 2019 mediante palabras claves. Se incluyeron sistemas de clasificación que se centraran en funciones y estructuras corporales, consideren la Clasificación internacional del funcionamiento, de la discapacidad y de la salud, estén validados y en idioma inglés y en español. La calidad de los trabajos fue valorada de acuerdo al AGREE reporting checklist. Resultados: Se encontraron seis sistemas de clasificación destinado a personas con PC sobre sus funciones y estructuras corporales. Cada uno de los sistemas se centra en una función o habilidad específica, que son: función motora gruesa, habilidades manuales, funciones de la comunicación, habilidades para comer y beber, resonancias magnéticas nuclear y funciones visuales. Conclusión principal: Todos los sistemas han sido validados, estandarizados y utilizados de forma internacional. Sirven para describir de forma más completa los niveles funcionales y de estructuras corporales de las personas con PC tanto a nivel clínico, poblacional e investigaciones.