<?xml version="1.0" encoding="ISO-8859-1"?><article xmlns:mml="http://www.w3.org/1998/Math/MathML" xmlns:xlink="http://www.w3.org/1999/xlink" xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance">
<front>
<journal-meta>
<journal-id>0211-6995</journal-id>
<journal-title><![CDATA[Nefrología (Madrid)]]></journal-title>
<abbrev-journal-title><![CDATA[Nefrología (Madr.)]]></abbrev-journal-title>
<issn>0211-6995</issn>
<publisher>
<publisher-name><![CDATA[Sociedad Española de Nefrología]]></publisher-name>
</publisher>
</journal-meta>
<article-meta>
<article-id>S0211-69952016000400376</article-id>
<article-id pub-id-type="doi">10.1016/j.nefro.2016.03.009</article-id>
<title-group>
<article-title xml:lang="es"><![CDATA[Plan PrEFiNE: Plan estratégico para la enfermedad de Fabry en Nefrología]]></article-title>
<article-title xml:lang="en"><![CDATA[PrEFiNe Plan: Strategic plan for Fabry diseases in Nephrology]]></article-title>
</title-group>
<contrib-group>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Pino]]></surname>
<given-names><![CDATA[M.D. del]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Ortiz]]></surname>
<given-names><![CDATA[A.]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Torra]]></surname>
<given-names><![CDATA[R.]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
<contrib contrib-type="author">
<name>
<surname><![CDATA[Hernandez]]></surname>
<given-names><![CDATA[D.]]></given-names>
</name>
<xref ref-type="aff" rid="Aff"/>
</contrib>
</contrib-group>
<aff id="Af1">
<institution><![CDATA[,Hospital Torrecárdenas Servicio de Nefrología ]]></institution>
<addr-line><![CDATA[Almería ]]></addr-line>
<country>España</country>
</aff>
<aff id="Af2">
<institution><![CDATA[,Fundación Jimenez Díaz Servicio de Nefrología ]]></institution>
<addr-line><![CDATA[Madrid ]]></addr-line>
<country>España</country>
</aff>
<aff id="Af3">
<institution><![CDATA[,Fundación Puigvert Servició de Nefrología ]]></institution>
<addr-line><![CDATA[Barcelona ]]></addr-line>
<country>España</country>
</aff>
<aff id="Af4">
<institution><![CDATA[,Hospital Regional Servicio de Nefrología ]]></institution>
<addr-line><![CDATA[Málaga ]]></addr-line>
<country>España</country>
</aff>
<pub-date pub-type="pub">
<day>00</day>
<month>08</month>
<year>2016</year>
</pub-date>
<pub-date pub-type="epub">
<day>00</day>
<month>08</month>
<year>2016</year>
</pub-date>
<volume>36</volume>
<numero>4</numero>
<fpage>376</fpage>
<lpage>380</lpage>
<copyright-statement/>
<copyright-year/>
<self-uri xlink:href="http://scielo.isciii.es/scielo.php?script=sci_arttext&amp;pid=S0211-69952016000400376&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://scielo.isciii.es/scielo.php?script=sci_abstract&amp;pid=S0211-69952016000400376&amp;lng=en&amp;nrm=iso"></self-uri><self-uri xlink:href="http://scielo.isciii.es/scielo.php?script=sci_pdf&amp;pid=S0211-69952016000400376&amp;lng=en&amp;nrm=iso"></self-uri><abstract abstract-type="short" xml:lang="es"><p><![CDATA[Resumen  Justificación: La enfermedad renal es una de las principales causas de muerte entre los pacientes con enfermedad de Fabry (EF). Al tratarse de una enfermedad de baja prevalencia, se realizan con frecuencia diagnósticos erróneos y retrasados, que a menudo se dan cuando ya se ha producido daño orgánico. El reconocimiento temprano de la enfermedad permitiría evitar las complicaciones graves y la muerte prematura en estos pacientes.  Objetivo: Presentamos en este artículo un resumen del plan PrEFiNE, que incluye un abanico amplio de actividades con el objetivo de mejorar el conocimiento y reconocimiento de la EF entre los nefrólogos. Este proyecto está patrocinado por Shire Ibérica (http://shireiberica.com/).  Métodos: Desde enero de 2016 y hasta finales del 2017 se iniciarán distintas actividades, comenzando por una evaluación del grado de conocimiento que existe actualmente sobre la EF. Se incluyen 3 estudios de prevalencia de la EF, que abarcan el espectro de los pacientes con enfermedad renal crónica (pacientes en diálisis, pacientes trasplantados renales y un estudio piloto en pacientes con enfermedad renal crónica en estadio 3-5 prediálisis) y un estudio farmacoeconómico, centrado en el impacto de la carga de la enfermedad. Paralelamente, se realizarán actividades formativas tanto presenciales como on line, y un amplio plan de comunicación mediante publicaciones y difusión a medios. El proyecto culminará con la publicación de un libro blanco de la EF en Nefrología, que recoja el resultado de todas las actividades y que proponga recomendaciones en respuesta a los resultados y a las necesidades detectadas. El plan PrEFiNE estará coordinado por distintos comités científicos, uno nacional y 10 regionales que garantizarán el desarrollo de las acciones con el máximo rigor científico y será supervisado por un comité asesor.  Discusión: El plan PrEFiNE nos permitirá evaluar la utilidad de un proyecto dirigido a mejorar el conocimiento de una enfermedad minoritaria como la EF a nivel nacional, y a partir del cual se podrán establecer las recomendaciones necesarias para mejorar su reconocimiento, además de planes enfocados a mejorar las necesidades no cubiertas detectadas durante su desarrollo.]]></p></abstract>
<abstract abstract-type="short" xml:lang="en"><p><![CDATA[Abstract  Background: Renal failure is one of the main causes of death in patients with Fabry disease (FD). Due to the low prevalence of FD, delayed diagnosis and misdiagnosis, often the correct diagnosis is made when organ damage is already present. Early recognition of the disease would allow the prevention of severe complications and the premature death of patients with FD.  Objective: We present here the PrEFiNE project, which includes a wide spectrum of activities with the aim of improve knowledge and diagnosis of FD. The project is sponsored by Shire Iberia (http://shireiberica.com/)  Methods: From January 2016 to the end of 2017 several activities will be carried out, starting with a survey to evaluate current FD knowledge among nephrologists; in addition some studies to assess prevalence of this disease will be performed. One study will include patients receiving dialysis, another study will cover kidney transplant patients, and a pilot study in chronic kidney disease in stage 3-5 predialysis. Also planned is a pharmacoeconomic study to focus on burden of FD. At the same time medical education activities will be conducted both on line and on site. Plan for dissemination will include medical publications and diffusion to media. PrEFiNE Project will finish with the publication of a compilation book on FD in Nephrology including all planned activities and proposing recommendations based on results and detected unmet needs. PrEfiNE Plan will be coordinated by severa scientific committees, one at national level and 10 other regionals comittees, tha will be responsible to ensure the maximum scientific quality of proposed activities. An advisory board will supervise the project.  Discussion: PrEfiNE project will evaluate an action plan focused on improving FD knowledge to make necessary recommendations for an early recognition of the disease. In addition will generate a plan to improve previously undetected needs.]]></p></abstract>
<kwd-group>
<kwd lng="es"><![CDATA[Proyecto PrEFiNE]]></kwd>
<kwd lng="es"><![CDATA[Enfermedad de Fabry]]></kwd>
<kwd lng="es"><![CDATA[Enfermedad renal crónica]]></kwd>
<kwd lng="es"><![CDATA[Diálisis]]></kwd>
<kwd lng="es"><![CDATA[Trasplante renal]]></kwd>
<kwd lng="en"><![CDATA[PrEFiNE Project]]></kwd>
<kwd lng="en"><![CDATA[Fabry disease]]></kwd>
<kwd lng="en"><![CDATA[Chronic kidney disease]]></kwd>
<kwd lng="en"><![CDATA[Dialysis]]></kwd>
<kwd lng="en"><![CDATA[Kidney transplant]]></kwd>
</kwd-group>
</article-meta>
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