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Proceso de notificación Enfermedades Huérfanas – INS
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El Instituto Nacional de Salud mediante la Circular Externa 049 de 2015, inicia el proceso de preparación para la notificación de Enfermedades Huérfanas – Raras, que deben realizar las Direcciones Departamentales, Distritales y Municipales de Salud, las IPS y las EAPB, a través del aplicativo SIVIGILA.
La notificación de Enfermedades Huérfanas- Raras, obedece con lo establecido en el artículo 7 de la Ley 1392 de 2010, que autoriza al Gobierno Nacional implementar un sistema de información de pacientes con Enfermedades Huérfanas – Raras.
Para dar cumplimiento con la ley, el Ministerio de Salud y Protección Social mediante el Decreto 1954 de 2012, estableció las disposiciones generales para implementar dicho sistema de información. En su artículo 4 el Decreto 1954 de 2012 se determinó que el proceso de recolección de información se haría en dos fases:
– La primera fase, sería de recopilación y consolidación de estas enfermedades, mediante la cuenta de alto costo, proceso que ya fue realizado.
– La segunda fase, es el reportare a través de notificación del caso en el SIVIGILA, de los pacientes nuevos diagnosticados.
A partir de Diciembre de 2015, se inicia el proceso que implementará la vigilancia en salud pública de Enfermedades Huérfanas- Raras como un evento de notificación rutinaria en el SIVIGILA, de acuerdo con el listado definido por el Ministerio de Salud y Protección Social a través de la Resolución 2048 de 2015.
Dicha actualización tiene como propósito mantener actualizado un registro sistemático con la información de los pacientes con diagnostico confirmado (laboratorio o consenso clínico) de cada una de las enfermedades.
En el registro se debe generar información sobre la incidencia, prevalencia, mortalidad y distribución geográfica de los casos; facilitando la identificación de las medidas necesarias para orientar acciones en recursos sanitarios, sociales y científicos requeridos para la atención.
Dentro de la Circular Externa 049 de 2015 del INS, están las responsabilidades que deben cumplir cada uno de los actores del Sistema General de Seguridad Social en Salud para dar inicio a la notificación de las Enfermedades Huérfanas – Raras.
La Circular Externa 049 de 2015 entra en vigencia a partir de su publicación.
Descargue: Notificación Enfermedades Huérfanas – Circular Externa 049 de 2015 –INS
Este artículo tiene documentos adjuntos que podrá descargar para ampliar su información:
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