Investigación
Proyecto clínico y de investigación con el Hospital Niño Jesús
El día 9 de octubre de 2019 se ha firmado un convenio de colaboración entre la Asociación de Afectados Síndrome de Landau-Kleffner y la Fundación para la Investigación Biomédica del Hospital Infantil Universitario Niño Jesús.
Este convenio lleva asociados, por un lado, un proyecto clínico para responder a las necesidades de los pacientes que padecen el Síndrome de Landau-Kleffner (SLK) y sus familias y, por otro lado, un proyecto de investigación para aumentar el conocimiento que se tiene de esta enfermedad en la literatura científica.
Este proyecto ha sido realizado por un equipo multidisciplinar del hospital, llevado a cabo desde la Unidad de Neuropsicología Clínica, contará con la participación de facultativos especialistas en Psicología Clínica (y neuropsicólogos clínicos), Neurofisiología Clínica y Neuropediatría.
En la actualidad tenemos un conocimiento escaso de las alteraciones cognitivas y comportamentales que acompañan a la afasia y a la actividad epileptógena, debido en parte a que el SLK es una enfermedad rara, lo que limita su estudio. El propósito del presente proyecto clínico/investigador consiste en proporcionar una evaluación neuropsicológica comprehensiva y objetiva del impacto del SLK en el funcionamiento neurocognitivo y comportamental, así como su relación con variables clínicas relativas a la enfermedad y con los tratamientos médicos y logopédico recibidos.
Caracterizar el perfil cognitivo y conductual, así como analizar el impacto del SLK en el desarrollo cognitivo y funcionamiento psicosocial de cada menor, nos permite detectar áreas relevantes de intervención para poder orientar sobre medidas rehabilitadoras que redunden en una mejora de la atención y calidad de vida de los niños que padecen este síndrome.
Debido al amplio rango de síntomas y su severidad, se realizará un abordaje específico a las familias sobre el estado clínico de su hijo afectado del síndrome de Landau Kleffner, que incluya asesoramiento sobre medidas terapéuticas pertinentes en caso particular. De la misma forma, se establecerán coordinaciones con orientadores y docentes de los centros educativos de referencia para ajustar la respuesta educativa a las necesidades de cada paciente según su momento evolutivo y estado clínico del niño.
De la misma forma, se establecerán coordinaciones con orientadores y docentes de los centros educativos de referencia para ajustar la respuesta educativa a las necesidades de cada paciente según su momento evolutivo y estado clínico del niño.
Esta firma es un gran paso para la Asociación y para el conocimiento del Síndrome de Landau-Kleffer. Desde aquí queremos agradecer a todas y cada una de las personas que formáis parte de la Asociación; a todas las personas que de manera desinteresada han organizado un evento; y a cada persona solidaria que nos hemos encontrado en el camino y ha decidido quedarse a nuestro lado.
Seguimos adelante. GRACIAS!
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