PrEFiNe Plan: Strategic plan for Fabry diseases in Nephrology.
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.


CONCLUSIONS
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.
Servicio de Nefrología, Hospital Torrecárdenas, Almería, España. Electronic address: mdpinoypino@gmail.com.
M D
MD
Del Pino
Servicio de Nefrología, Fundación Jimenez Díaz, Madrid, España.
A
A
Ortiz
Servició de Nefrología, Fundación Puigvert, Barcelona, España.
R
R
Torra
Servicio de Nefrología, Hospital Regional, Málaga, España.
D
D
Hernandez
D019468:Disease Management; D042241:Early Diagnosis; D004502:Education, Medical, Continuing / Q000458:organization & administration; D000795:Fabry Disease / Q000150:complications / Q000175:diagnosis / Q000453:epidemiology; D007722:Health Knowledge, Attitudes, Practice; D006293:Health Promotion / Q000458:organization & administration*; D006301:Health Services Needs and Demand; D006801:Humans; D033181:Information Dissemination; D007676:Kidney Failure, Chronic / Q000209:etiology / Q000517:prevention & control / Q000628:therapy; D009398:Nephrology / Q000193:education / Q000458:organization & administration*; D010353:Patient Education as Topic; D010865:Pilot Projects; D015995:Prevalence; D006435:Renal Dialysis; D013030:Spain / Q000453:epidemiology
Chronic kidney disease; Dialysis; Diálisis; Enfermedad de Fabry; Enfermedad renal crónica; Fabry disease; Kidney transplant; PrEFiNE Project; Proyecto PrEFiNE; Trasplante renal