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¡LO QUIERO!

Estudio sobre el conocimiento de las encefalopatías epilépticas y del desarrollo en el ámbito escolar

Si eres enfermero escolar y ejerces en España, te invitamos a participar en el “Estudio sobre el conocimiento de las encefalopatías epilépticas y del desarrollo en el ámbito escolar”. El objetivo de este estudio es comprender el conocimiento actual de las encefalopatías epilépticas y del desarrollo en el ámbito escolar, así como la existencia de planes de actuación y posible mejora formativa en los profesionales escolares, con el objetivo de poder realizar una mejora de propuesta que pueda mejorar la integración y actuación con alumnos con encefalopatías epilépticas y del desarrollo.

Este estudio se lleva a cabo conjuntamente por la Fundación Síndorme de Dravet y por AMECE. Los resultados obtenidos del mismo se presentarán como publicación científica y/o en eventos científicos.

Le invitamos a leer detenidamente la hoja de información del estudio y a contactarnos en [email protected] en el caso de que le surja alguna duda o pregunta.

    Para comenzar con el estudio, necesitamos que:

    ¿Es usted mayor de edad y ejerce como enfermero/a escolar en España?

    Desafortunadamente, no es elegible para participar en este estudio.

    Datos sociodemográficos

    1. Edad

    2. Género con el que se identifica
    HombreMujerOtroPrefiero no contestar

    2a. Por favor, especifique

    3. Provincia donde ejerce

    4. ¿Cuántos años de experiencia posees como enfermero/a escolar?

    5. ¿Dónde ejerces como enfermero/a escolar? Selecciona todas las que apliquen a su centro
    Escuela de educación infantilColegio de educación primariaColegio de educación secundariaCentro de formación profesionalCentro de bachilleratoColegio de educación especial

    6. ¿Cómo es tu centro?
    Centro públicoCentro privadoCentro concertado

    7. Hábitat de trabajo:
    RuralUrbano

    Datos clínicos y profesionales

    1. Cupo aproximado de alumnos:

    2. Contándote a ti, ¿cuántos enfermeros hay en su centro?

    3. ¿Cuenta su centro con otros profesionales sanitarios?
    SíNo

    4. En caso afirmativo, indique cuáles:

    5. ¿Conoce el síndrome de Dravet?

    6. Número de alumnos atendidos al mes con síndrome de Dravet u otras encefalopatías epilépticas y del desarrollo (EED)
    Las encefalopatías epilépticas y del desarrollo (EED) son trastornos en los que existe una alteración del desarrollo relacionada tanto con la etiología subyacente independiente de la actividad epileptiforme como con la encefalopatía epiléptica, es decir, que la comorbilidad del neurodesarrollo puede ser atribuible tanto a la causa subyacente como a los efectos adversos de la actividad epiléptica incontrolada

    7. En el colegio donde ejerce, ¿hay alguna persona que padezca una enfermedad rara?

    8. ¿Ha tenido que tratar a algún alumno por crisis epilépticas?

    9. ¿Qué tipo de encefalopatías epilépticas y del desarrollo se ha encontrado en su centro?
    NingunaCrisis gelásticas con hamartoma hipotalámico (HH)Encefalopatía epiléptica y del desarrollo asociada al gen SYNGAP1Encefalopatía epiléptica y del desarrollo con activación de descargas de espiga-onda lenta en el sueño (POCS – puntas y ondas continuas durante el sueño)Encefalopatía epiléptica y del desarrollo infantil tempranaEncefalopatía epiléptica y del desarrollo por CDKL5Encefalopatía epiléptica y del desarrollo por deficiencia de pridox(am)ina 5 fosfato (PNPO)Encefalopatía epiléptica y del desarrollo por KCNQ2Epilepsia con crisis focales migratorias de la infanciaEpilepsia con crisis mioclónico atónicasEpilepsia de hemiconvulsión hemiplegia (HHE)Epilepsia por agrupación por protocaderia 19 (PCDH19)Epilepsias mioclónico progresivasSíndrome de DravetSíndrome de espasmos epilépticos de la infanciaSíndrome de Lennox Gastaut (LGS)Síndrome de RasmussenSíndrome de Sturge WeberSíndrome epiléptico relacionado con infección febril (FIRES)Síndrome por deficiencia de transportador de glucosa 1 (GLUT1)Otra

    9a. Por favor, especifique

    10. ¿Posee tratamiento disponible en su centro de trabajo para tratar una crisis o estatus epiléptico?

    11. Referente al tratamiento disponible, ¿qué fármacos utilizan para el control de estas crisis epilépticas?
    BuccolamStesolidOtro

    11a. Por favor, especifique

    12. ¿Con cuántas crisis epilépticas se ha encontrado aproximadamente en los últimos 12 meses?

    13. ¿Qué edad tenía estos alumnos?

    14. ¿Tuvieron estas crisis epilépticas factores desencadenantes concretos?

    15. En caso positivo, escríbalo:

    16. ¿Cuánto faltan al colegio debido a las crisis epilépticas y a la enfermedad que tienen?

    17. ¿Sabe si está muchas veces hospitalizado por ello?

    18. ¿Existe un protocolo de actuación en su centro para tratar las crisis epilépticas en caso de que usted no estuviese?

    19. ¿Cree que usted tiene la formación suficiente para tratar una crisis epiléptica?

    20. En caso negativo, ¿Cómo le gustaría complementar su formación?
    Webinars síncronosWebinars asíncronosCurso presencial de larga duración (i.e. > 1 día)Curso presencial de corta duración (i.e. < 1 día)Otro

    20a. Por favor, especifique

    21. ¿Conocen todos los profesionales el protocolo o plan de actuación hasta la llegada del enfermero/a?

    22. ¿Cree que el plan de actuación está bien difundido en su centro escolar?

    23. ¿Cuál cree que sería el mejor método para difundir un plan de actuación?
    Reunión/formación con el equipo de profesionalesReunión/formación con la organización de pacientesDisponer de material impreso a la vista en el centroOtro

    23a. Por favor, especifique

    24. ¿Cree que los demás integrantes del centro (maestros, educadores, encargados de comedor, cuidadores…) sabrían tratar una crisis epiléptica?

    25. En caso negativo, ¿cree que deberían tener algún tipo de formación al respecto?

    26. ¿Qué tipo de formación?

    27. ¿Es usted el encargado/a de formar al resto de profesionales?

    28. ¿Se siente capacitado/a para ello?

    29. En caso negativo, ¿por qué?

    30. ¿Qué medios consideraría necesarios para realizar la formación al resto de profesionales?

    ¡Haz tu donación!

    Tu aportación se destinará a ayudar a nuestros guerreros y sus familias en su lucha contra el síndrome de Dravet, para conseguir que no pierdan nunca la sonrisa.

    Donación
    Esperanza
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    TERMS & CONDITIONS

    The Dravet Syndrome Conference 2023 is organised by Dravet Syndrome Foundation Spain, whose registered office is located at Calle Doctor Fleming, 30, 28036 Madrid, Spain.

    The conference shall take place at the Official College of Nursing of Madrid, at Avenida de Menéndez Pelayo, 93, 28007 Madrid, Spain, on Thursday 23rd of March 2023. Attendance to this conference is free of charge, but mandatory for organisational reasons.

    Participants must register online at www.dravetconference.com. Upon registration, each participant will receive an electronic confirmation by email. On-site registration will not be be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at [email protected].

    The conference registration includes: Attendance to all sessions, oral and visual presentations, all coffee and lunch breaks, and conference documentation with all information about the event. The registration does not include travel and accommodation costs or any other personal expenses.

    Admittance to the conference without registration cannot be granted.

    Conference Attendance
    Upon arrival at the Official College of Nursing of Madrid the day of the event, all participants have to check-in at the onsite Conference Registration Desk. The desk will open on 23rd of March at 8:30 a.m. Upon registration onsite, the conference team will provide participants with information about the event and a badge, which should be worn visibly at all times. The personalised badge authorises participants to attend all conference sessions, and lunch and coffee breaks.

    Cancellation Policy
    Dravet Syndrome Foundation Spain reserves the right to cancel any registration forthwith and without liability on its part in the event of any damage to, or destruction of the venue by fire, shortage of labour, strikes, industrial unrest, public health measures, or any other cause beyond the control of the Dravet Syndrome Foundation Spain, which shall prevent it from performing its obligations. In these circumstances, every effort will be made to find an alternative format/venue or propose a new date for the conference. Should the conference be cancelled for any reason, airfares, hotels, or other costs incurred by the participants are not reimbursed by the Dravet Syndrome Foundation Spain.

    Any participant is allowed to cancel his/her registration but must notify this to the conference organisers by e-mail at [email protected] within a minimum of 10 days prior the event. Failure to attend the event without prior written notification by email may incur a no-show fee, which shall cover individual organizational, material and catering costs.

    Name Change
    All registrations are only valid for the respective person mentioned in the form. A registered participant unable to attend the conference may nominate (free of charge) a substitute participant by notifying the conference organisers by email at [email protected] before 16th of March 2023. The procedure allows giving the last name, first name, and email address of the new participant.

    Personal Data
    Upon registration, the participant authorises Dravet Syndrome Foundation Spain to use their personal data stated above to inform the participant of any further conferences, events, or information concerning the conference and Dravet Syndrome Foundation Spain’s activities. The conference booklet online will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. The conference printed booklet will contain full abstract texts from all participants. Conference certificates will be sent to the participants as a PDF document upon request at [email protected]. Only the name & affiliation will be stated in the certificate, not the email addresses of the participants.

    Information is collected by an automated computer system that manages registrations. Security and confidentiality are guaranteed by state-of-the-art technical tools. However, Dravet Syndrome Foundation Spain declines any responsibility concerning data security transmitted through the internet.

    Photography
    The conference is held in public; therefore, we do not ban participants, exhibitors, partners and other companies from taking photographs of conference activities and participants, and share it via social media. By participating in the conference, you approve that general pictures will be taken and used for our Social Media output, our websites and other communication purposes. You hereby waive any right to oppose, and expressly authorise the organiser to make them available on the Internet or as it may seem fit. Author’s presentation slides shall not be photographed by any conference participant. 

    Disclaimer
    The conference organiser cannot be held responsible for any loss, injury or damage to any property, whatever the cause may be. Should, for any reason outside the organiser’s control (e.g., political or economic circumstances or a case of ‘force majeure’), the venue or speakers change, or the event be cancelled, the organiser will endeavour to reschedule, but shall not be held responsible for any costs, damages or expenses incurred by the participants. If for any reason the organiser decides to make material changes to this conference, the organiser is not responsible for airfares, hotels or other costs incurred by the participants. The participant takes part in the conference, all tours, and trips at his own risk.

    Copyright
    The participant is allowed to use the conference documentation exclusively for his/her personal needs.

    TERMS & CONDITIONS

    The European Dravet Syndrome Advanced Therapies (EDSAT) Meeting 2023 is organised by Dravet Syndrome Foundation Spain, whose registered office is located at Calle Doctor Fleming, 30, 28036 Madrid, Spain.

    The conference shall take place at the Official College of Nursing of Madrid, at Avenida de Menéndez Pelayo, 93, 28007 Madrid, Spain, on Friday 24th of March 2023. Attendance to this conference is free of charge, but mandatory for organisational reasons.

    Participants must register online at www.dravetconference.com. Upon registration, each participant will receive an electronic confirmation by email. On-site registration will not be be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at [email protected].

    The conference registration includes: Attendance to all sessions, oral and visual presentations, all coffee and lunch breaks, and conference documentation with all information about the event. The registration does not include travel and accommodation costs or any other personal expenses.

    Admittance to the conference without registration cannot be granted.

    Conference Attendance
    Upon arrival at the Official College of Nursing of Madrid the day of the event, all participants have to check-in at the onsite Conference Registration Desk. The desk will open on 24th of March at 8:30 a.m. Upon registration onsite, the conference team will provide participants with information about the event and a badge, which should be worn visibly at all times. The personalised badge authorises participants to attend all conference sessions, and lunch and coffee breaks.

    Cancellation Policy
    Dravet Syndrome Foundation Spain reserves the right to cancel any registration forthwith and without liability on its part in the event of any damage to, or destruction of the venue by fire, shortage of labour, strikes, industrial unrest, public health measures, or any other cause beyond the control of the Dravet Syndrome Foundation Spain, which shall prevent it from performing its obligations. In these circumstances, every effort will be made to find an alternative format/venue or propose a new date for the conference. Should the conference be cancelled for any reason, airfares, hotels, or other costs incurred by the participants are not reimbursed by the Dravet Syndrome Foundation Spain.

    Any participant is allowed to cancel his/her registration but must notify this to the conference organisers by e-mail at [email protected] within a minimum of 10 days prior the event. Failure to attend the event without prior written notification
    by email may incur a no-show fee, which shall cover individual organizational, material and catering costs.

    Name Change
    All registrations are only valid for the respective person mentioned in the form. A registered participant unable to attend the conference may nominate (free of charge) a substitute participant by notifying the conference organisers by email at [email protected] before 17th of March 2023. The procedure allows giving the last name, first name, and email address of the new participant.

    Personal Data
    Upon registration, the participant authorises Dravet Syndrome Foundation Spain to use their personal data stated above to inform the participant of any further conferences, events, or information concerning the conference and Dravet Syndrome Foundation Spain’s activities. The conference booklet online will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. The conference printed booklet will contain full abstract texts from all participants. Conference certificates will be sent to the participants as a PDF document upon request at [email protected]. Only the name & affiliation will be stated in the certificate, not the email addresses of the participants.

    Information is collected by an automated computer system that manages registrations. Security and confidentiality are guaranteed by state-of-the-art technical tools. However, Dravet Syndrome Foundation Spain declines any responsibility concerning data security transmitted through the internet.

    Photography
    The conference is held in public; therefore, we do not ban participants, exhibitors, partners and other companies from taking photographs of conference activities and participants, and share it via social media. By participating in the conference, you approve that general pictures will be taken and used for our Social Media output, our websites and other communication purposes. You hereby waive any right to oppose, and expressly authorise the organiser to make them available on the Internet or as it may seem fit. Author’s presentation slides shall not be photographed by any conference participant.

    Disclaimer
    The conference organiser cannot be held responsible for any loss, injury or damage to any property, whatever the cause may be. Should, for any reason outside the organiser’s control (e.g., political or economic circumstances or a case of ‘force majeure’), the venue or speakers change, or the event be cancelled, the organiser will endeavour to reschedule, but shall not be held responsible for any costs, damages or expenses incurred by the participants. If for any reason the organiser decides to make material changes to this conference, the organiser is not responsible for airfares, hotels or other costs incurred by the participants. The participant takes part in the conference, all tours, and trips at his own risk.

    Copyright
    The participant is allowed to use the conference documentation exclusively for his/her personal needs.

    TERMS & CONDITIONS

    The European Dravet Syndrome Advanced Therapies (EDSAT) Meeting 2022 is organised by Dravet Syndrome Foundation Spain, whose registered office is located at Calle Doctor Fleming, 30, 28036 Madrid, Spain.

    The conference shall take place at the Illustrious Official College of Physicians of Madrid, at Calle de Santa Isabel, 51, 28012 Madrid, Spain, on Friday 1st of April 2022. Attendance to this conference is free of charge, but mandatory for organisational reasons. Participants must register online at www.dravetconference.com. Upon registration, each participant will receive an electronic confirmation by email. On-site registration will not be be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at [email protected].

    The conference registration includes: Attendance to all sessions, oral and visual presentations, all coffee and lunch breaks, and conference documentation with all information about the event. The registration does not comprise travelling and accommodation costs or any other personal expenses.

    Admittance to the workshop without registration cannot be granted.

    Conference Attendance
    Upon arrival at the Illustrious Official College of Physicians of Madrid the day of the event, all participants have to register at the onsite Conference Registration Desk. The desk will open on 1st of April at 8:30 a.m. Upon registration onsite, the conference team will provide participants with information about the event and a badge, which should be worn visibly at all times. The personalised badge authorises participants to attend all conference sessions, and lunch and coffee breaks.

    Cancellation Policy
    Dravet Syndrome Foundation Spain reserves the right to cancel any registration forthwith and without liability on its part in the event of any damage to, or destruction of the venue by fire, shortage of labour, strikes, industrial unrest, public health measures, or any other cause beyond the control of the Dravet Syndrome Foundation Spain, which shall prevent it from performing its obligations. In these circumstances, every effort will be made to find an alternative format/venue or propose a new date for the conference. Should the conference be cancelled for any reason, airfares, hotels, or other costs incurred by the participants are not reimbursed by the Dravet Syndrome Foundation Spain.

    Any participant is allowed to cancel his/her registration but must notify this to the conference organisers by e-mail at [email protected] within a minimum of 10 days
    prior the event. Failure to attend the event without prior written notification
    by email may incur a no-show fee, which shall cover individual organizational,
    material and catering costs.

    Name Change
    All registrations are only valid for the respective person mentioned in the form. A registered participant unable to attend the conference may nominate (free of charge) a substitute participant by notifying the conference organisers by email at [email protected] before 24th of March 2022. The procedure allows giving the last name, first name, and email address of the new participant.

    Personal Data
    Upon registration, the participant authorises Dravet Syndrome Foundation Spain to use their personal data stated above to inform the participant of any further conferences, events, or information concerning the conference and Dravet Syndrome Foundation Spain’s activities. The conference booklet online will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. The conference printed booklet will contain full abstract texts from all participants. Conference certificates will be sent to the participants as a PDF document upon request at [email protected]. Only the name & affiliation will be stated in the certificate, not the email addresses of the participants.

    Information is collected by an automated computer system that manages registrations. Security and confidentiality are guaranteed by state-of-the-art technical tools. However, Dravet Syndrome Foundation Spain declines any responsibility concerning data security transmitted through the internet.

    Photography
    The conference is held in public; therefore, we do not ban participants, exhibitors, partners and other companies from taking photographs of conference activities and participants, and share it via social media. By participating in the conference, you approve that general pictures will be taken and used for our Social Media output, our websites and other communication purposes. You hereby waive any right to oppose, and expressly authorise the organiser to make them available on the Internet or as it may seem fit. Author’s presentation slides shall not be photographed by any conference participant.

    Disclaimer
    The conference organiser cannot be held responsible for any loss, injury or damage to any property, whatever the cause may be. Should, for any reason outside the organiser’s control (e.g., political or economic circumstances or a case of ‘force majeure’), the venue or speakers change, or the event be cancelled, the organiser will endeavour to reschedule, but shall not be held responsible for any costs, damages or expenses incurred by the participants. If for any reason the organiser decides to make material changes to this conference, the organiser is not responsible for airfares, hotels or other costs incurred by the participants. The participant takes part in the conference, all tours, and trips at his own risk.

    Copyright
    The participant is allowed to use the conference documentation exclusively for his/her personal needs.

    TERMS & CONDITIONS

    The Dravet Syndrome Conference 2022 is organised by Dravet Syndrome Foundation Spain, whose registered office is located at Calle Doctor Fleming, 30, 28036 Madrid, Spain.

    The conference shall take place at the Illustrious Official College of Physicians of Madrid, at Calle de Santa Isabel, 51, 28012 Madrid, Spain, on Thursday 31st of March 2022. Attendance to this conference is free of charge, but mandatory for organisational reasons. Participants must register online at www.dravetconference.com. Upon registration, each participant will receive an electronic confirmation by email. On-site registration will not be be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at [email protected].

    The conference registration includes: Attendance to all sessions, oral and visual presentations, all coffee and lunch breaks, and conference documentation with all information about the event. The registration does not include travel and accommodation costs or any other personal expenses.

    Admittance to the conference without registration cannot be granted.

    Conference Attendance
    Upon arrival at the Illustrious Official College of Physicians of Madrid the day of the event, all participants have to register at the onsite Conference Registration Desk. The desk will open on 31st of March at 8:30 a.m. Upon registration onsite, the conference team will provide participants with information about the event and a badge, which should be worn visibly at all times. The personalised badge authorises participants to attend all conference sessions, and lunch and coffee breaks. 

    Cancellation Policy
    Dravet Syndrome Foundation Spain reserves the right to cancel any registration forthwith and without liability on its part in the event of any damage to, or destruction of the venue by fire, shortage of labour, strikes, industrial unrest, public health measures, or any other cause beyond the control of the Dravet Syndrome Foundation Spain, which shall prevent it from performing its obligations. In these circumstances, every effort will be made to find an alternative format/venue or propose a new date for the conference. Should the conference be cancelled for any reason, airfares, hotels, or other costs incurred by the participants are not reimbursed by the Dravet Syndrome Foundation Spain.

    Any participant is allowed to cancel his/her registration but must notify this to the conference organisers by e-mail at [email protected] within a minimum of 10 days prior the event. Failure to attend the event without prior written notification by email may incur a no-show fee, which shall cover individual organizational, material and catering costs.

    Name Change
    All registrations are only valid for the respective person mentioned in the form. A registered participant unable to attend the conference may nominate (free of charge) a substitute participant by notifying the conference organisers by email at [email protected] before 24th of March 2022. The procedure allows giving the last name, first name, and email address of the new participant.

    Personal Data
    Upon registration, the participant authorises Dravet Syndrome Foundation Spain to use their personal data stated above to inform the participant of any further conferences, events, or information concerning the conference and Dravet Syndrome Foundation Spain’s activities. The conference booklet online will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. The conference printed booklet will contain full abstract texts from all participants. Conference certificates will be sent to the participants as a PDF document upon request at [email protected]. Only the name & affiliation will be stated in the certificate, not the email addresses of the participants.

    Information is collected by an automated computer system that manages registrations. Security and confidentiality are guaranteed by state-of-the-art technical tools. However, Dravet Syndrome Foundation Spain declines any responsibility concerning data security transmitted through the internet.

    Photography
    The conference is held in public; therefore, we do not ban participants, exhibitors, partners and other companies from taking photographs of conference activities and participants, and share it via social media. By participating in the conference, you approve that general pictures will be taken and used for our Social Media output, our websites and other communication purposes. You hereby waive any right to oppose, and expressly authorise the organiser to make them available on the Internet or as it may seem fit. Author’s presentation slides shall not be photographed by any conference participant. 

    Disclaimer
    The conference organiser cannot be held responsible for any loss, injury or damage to any property, whatever the cause may be. Should, for any reason outside the organiser’s control (e.g., political or economic circumstances or a case of ‘force majeure’), the venue or speakers change, or the event be cancelled, the organiser will endeavour to reschedule, but shall not be held responsible for any costs, damages or expenses incurred by the participants. If for any reason the organiser decides to make material changes to this conference, the organiser is not responsible for airfares, hotels or other costs incurred by the participants. The participant takes part in the conference, all tours, and trips at his own risk.

    Copyright
    The participant is allowed to use the conference documentation exclusively for his/her personal needs.