Diagnóstico, tratamiento y manejo del síndrome de Dravet

07.Jul - 09.Jul

Cod. O09-21

Enrollment is free thanks to the sponsorship of Dravet Syndrome Foundation/ Official language of the activity: Spanish

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Enrollment is free thanks to the sponsorship of Dravet Syndrome Foundation.

Dravet syndrome (DS), also known as Severe Myoclonic Epilepsy in Infancy (SMEI), is a severe and disabling neurological disease of genetic origin. Between 80 and 90 percent of affected patients have a mutation in the SCN1A gene. With an incidence of 1 in 16,000 births, DS is included in the group of rare diseases (1/2,500). In Spain it is estimated that there must be around 450-500 patients correctly diagnosed with DS. However, data on the prevalence of the disease suggest that this number should be higher than 1,500.

One of the most visible symptoms in DS is epilepsy, which begins to manifest itself between 4 and 12 months of age. Seizures may initially be mistaken for febrile seizures, which are common in many children. However, unlike febrile seizures, the initial seizures in DS are usually prolonged and difficult to control, leading to status epilepticus and requiring admission to the ICU. At older ages, other types of seizures frequently appear, cognitive delay becomes evident and other neurological disorders and severe behavioral problems appear. Between 15 and 20 percent of people with DS die as a result of the disease.

In Spain there are currently eight Centers, Services and Reference Units of the National Health System for refractory epilepsy, where DS could be included. However, DS is much more than an epilepsy, and its approach must go beyond treating only seizures; DS must be managed from a multidisciplinary point of view, involving health professionals from different areas. Therefore, no center is fully prepared for the complexity and multidisciplinarity involved in the management and treatment of DS. Moreover, according to current Dravet Syndrome Foundation Spain data, the Basque Country is one of the five Spanish Autonomous Communities with the highest rate of underdiagnosis of DS, especially in the group of adult patients.

The Summer Course 'Diagnosis, treatment and management of Dravet syndrome', aimed mainly at students and professional staff in the field of health and life sciences, and organized by the Dravet Syndrome Foundation Spain, raises essential aspects for the correct approach to DS: (1) Description of the signs and symptoms of DS and related epilepsies that can facilitate a clinical and genetic diagnosis, (2) Discussion of emerging treatment options for DS in the context of the current treatment paradigm, and (3) Description of the role of the multidisciplinary team in the management of patients with DS.

Objectives

To introduce students to the knowledge of a disease that, due to its infrequent nature, will be difficult to study during their years of training as future physicians.

To anticipate the education that these students will receive during future training residencies in accredited centers and teaching units for the acquisition of professional competencies specific to their specialty.

To introduce or broaden the knowledge of professional students about a severe disease that is underdiagnosed and not always well attended.

To generate the students' interest in working in the future with a group of patients and families who need prepared professionals to provide them with all the care available.

 

To generate as well the interest of students to research in DS.

Activity directed to

  • University students
  • Students not from university
  • Professionals

Methodology

This Summer Course is oriented to promote meaningful learning experiences for students, applying active, innovative, participative and close to the students methodological strategies.

Live sessions will be held, which will also be recorded and incorporated into the section enabled for this purpose in Moodle. Once the course has finished, students will have access to the platform for 2 more weeks to download the documentation.

The Course, which will have 6 speakers, will have a total duration of three days (just over 8 hours: 16:00-19:00 W-T and 15:30-18:15 F. Each session will have a maximum duration of 45 minutes, with the first 30 minutes dedicated to the presentation and 15 minutes for questions. The Course Director and/or the moderator will introduce each speaker.

Before the beginning of the classes, students will be provided with all the documentation related to the ZOOM, Moodle and Mentimeter platforms. Students will also have at their disposal, in the Moodle platform, (i) a video presentation in mp4 format explaining through a Power Point the course schedule and activities to be carried out, (ii) the document shown in the video in pdf format, (iii) course schedule, (iv) tutoring and live class schedules, (v) teaching material in pdf format (material presented during the session, literature related to the topics covered in each lecture, additional sources of reference for students to broaden their knowledge, and a list of professionals, institutions, reference societies in each of the aspects presented during the course).

At the beginning of the course, an initial activity will be carried out for the students to start interacting with the platforms and for the teaching staff to detect the students' previous knowledge. This will be done by means of a survey at the beginning of the course on general knowledge about developmental epileptic encephalopathies, DS, human genetics, neurological treatments, etc. The digital tool Mentimeter will be used for this survey.

During the Course, students will acquire new knowledge by connecting it to their previous knowledge. Each block of content will have an associated evaluation so that students can monitor their progress. It will consist of three test-type questionnaires (one per learning block/day) with questions related to the information provided during each content block. The questionnaires will be answered and resolved live, through the Mentimeter tool, during the time established for this purpose before the end of each block.

At the end of the course, what has been learned during the different blocks will be summarized and the contact details and information related to the tutorials made available to the students will be provided. At the end of the course, a final evaluation will be carried out by means of a student satisfaction survey that will be incorporated into the Moodle platform.

  • Streaming course
    • Health
    • Science and technology
  • 07.Jul - 09.Jul
  • Live online
  • Spanish
  • Academic Validity: 30 hours
  • Web