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.

Desarrollo y aplicación de un protocolo de evaluación de los movimientos generales de Prechtl en lactantes. De la teoría a la práctica / Development and application of a protocol for the evaluation of Prechtl's general movements "from theory to practice"

Introducción. Las guías internacionales plantean que la evaluación de los movimientos generales en los recién nacidos puede ser una herramienta altamente predictiva para el diagnóstico temprano de la parálisis cerebral. Su uso en países en desarrollo como Colombia es limitado, por ello el diseño de un protocolo de evaluación de los movimientos generales permitiría optimizar el acceso de poblaciones de riesgo a esta herramienta. Objetivos. Desarrollar un protocolo de evaluación de los movimientos generales y los desenlaces en el desarrollo de los niños con riesgo de parálisis cerebral después de los 14 meses y evaluar su aplicabilidad en niños con dificultades de acceso a los servicios de salud. Métodos. El protocolo se planteó con un esquema de valoración de cuatro etapas. Según la edad al momento de ingreso al programa, se realizaron ajustes para la valoración, el análisis y el seguimiento de los pacientes. Los videos, que fueron grabados según las recomendaciones publicadas en la literatura médica relacionada con la metodología utilizada, fueron evaluados por profesionales certificados. Resultados. Se reporta el protocolo sugerido para la evaluación cualitativa y semicuantitativa de los movimientos generales y se presentan los resultados de su aplicación en 11 niños incluidos en la prueba piloto. Este protocolo, que fue diseñado con base en una revisión de la literatura y la experiencia de dos de los investigadores, incluye información para grabar los videos, realizar la evaluación médica, aplicar la evaluación cualitativa de Prechtl de los movimientos generales del recién nacido y el examen neurológico infantil Hammersmith. Conclusión. La evaluación de los movimientos generales constituye una herramienta valiosa para la valoración del riesgo de parálisis cerebral en lactantes. La utilización de un protocolo garantiza una evaluación seriada y sistemática, por lo que es conveniente implementar su uso en centros de atención primaria y mejorar la accesibilidad a estas herramientas.

Introduction. International guidelines set up that the evaluation of the general movements in newborns could be a highly predictive tool for the early diagnosis of cerebral palsy. Their use in developing countries such as Colombia is limited; thus, the design of a protocol for the evaluation of general movements would allow to optimize the access of at-risk populations to this tool. Objectives. To develop a protocol for the evaluation of the general movements and outcomes in the development of the children at risk of presenting cerebral palsy after 14 months of age and assess its applicability in children with difficult access to healthcare services. Methods. The protocol was raised using a four-stage evaluation scheme. According to the age at the time of entry into the program, adjustments were made for the assessment, analysis and follow-up of the patients. The videos, which were recorded according to the recommendations published in the medical literature related to the methodology used, were evaluated by certified professionals. Results. The suggested protocol for the qualitative and semiquantitative evaluation of the general movements is reported and the results of its application in 11 children included in the pilot test are presented. This protocol, which was designed based on a literature review and the experience of two of the researchers, includes information to record the videos, perform the medical evaluation, apply the Prechtl´s qualitative evaluation of the general movements of the newborn and the Hammersmith infant neurological evaluation. Conclusion. The evaluation of the general movements constitutes a valuable tool for the assessment of the risk of cerebral palsy in infants. The use of a protocol guarantees a serial and systematic evaluation; therefore, it is convenient to implement its use in primary care centers and improve the accessibility to these tools.

Adapting ride-on toy cars as a tool to promote leisure: A feasibility study in Colombia.

Go Baby Go is a program at the University of Delaware that adapts ride-on toy cars for the recreation of children with disabilities. Colombia's health-care system faces many challenges in delivering early mobility devices to these children; thus, here (in Colombia), no dedicated programs such as Go Baby Go exist. In this study, we examined how feasible it would be to implement a Go Baby Go program in our country. Electronic and seating adaptations to the cars were made and described. We chose three participants from a pool of children with cerebral palsy (Gross Motor Function Classification System IV), according to a set of inclusion and exclusion criteria. Then, we measured theirs and their parent's level of satisfaction with the experience through a Likert scale. All of the parents described seeing their kids ride the adapted cars as "extremely fun". They also said that it is "extremely important" to have these devices close by so that their children can get involved in recreational activities.

Rehabilitación pediátrica en tiempos de Covid-19: retos y aprendizajes durante la pandemia / Pediatricre habilitation in times of Covid-19: Challenges and opportunities during the pandemic

A partir del modelo conceptual planteado en la Clasificación Internacional de Funcionamiento, Discapacidad y Salud (CIF), y específicamente en su versión para niños y adolescentes, se propone que los programas y servicios para la población pediátrica con discapacidad incluyan las diferentes dimensiones allí planteadas, pero muy especialmente los aspectos relacionados con la participación, la eliminación de barreras del contexto, e implementando modelos que se centren en la función y la independencia en las actividades cotidianas del niño. Basados en esta premisa, y en las recomendaciones de diferentes autores, el Comité de Rehabilitación de Antioquia, en la ciudad de Medellín ­ Colombia, ha venido implementando un modelo de atención que tiene como eje central el logro de independencia en las actividades de la vida diaria y la promoción de la participación. Los programas que se han derivado de este modelo para la atención de niños y adolescentes se presentan en este artículo. De otra parte, la pandemia actual por Covid-19 y la cuarentena en el país han revelado la importancia de la telerrehabilitación, de la defensa de los derechos de los niños con discapacidad y de los modelos de atención que se enfocan en la familia y en el contexto. Este artículo presenta al final una propuesta de agenda que permita transformar los modelos de atención en rehabilitación pediátrica y que tenga presente los aprendizajes que se han venido generando durante este período de emergencia sanitaria por el Covid-19

Based on the conceptual model proposed in the International Classification of Functioning, Disability and Health (ICF), and specifically in its version for children and adolescents, it is proposed that programs and services for the pediatric population with disabilities include the different dimensions raised therein, but especially aspects related to participation, the elimination of barriers of the context, and implementing models that focus on function and independence in the child's daily activities. Based on this premise, and on the recommendations of different authors, the Rehabilitation Committee of Antioquia, in the city of Medellin - Colombia, has been implementing a model of care that has as its central axis the achievement of independence in the activities of daily living and the promotion of participation. The programs that have been derived from this model for the care of children and adolescents are presented in this article. On the other hand, the current Covid-19 pandemic and the quarantine in the country have revealed the importance of telerehabilitation, the defense of the rights of children with disabilities, and models of care that focus on the family and the context. Finally, this article presents a proposal for an agenda to transform the models of care in pediatric rehabilitation, taking into account the lessons learned during this period of health emergency due to Covid-19.