Juan Dario Ortigoza Escobar | Paediatric Neurologist Consultant
Hospital Sant Joan de Déu
Doctor in Medicine. Paediatric Neurologist in the Hospital Sant Joan de Déu in Barcelona, Spain. Specialist in movement disorders. He is member of the Spanish Society of Pediatric Neurology, the European Pediatric Neurology Society, the Society for the Study of Inborn Errors of Metabolism and the International Parkinson and Movement Disorder Society.
Appearances:
Day 3 - Friday 25th October @ 13:30
Panel: From evidence to practice in Rare Diseases: ERN Guidelines Programme and Patient Involvement
-Methodological CPG development approach in Rare Diseases. Guidelines Program and Patient Involvement Handbook. Content: European Program description (working packages, methodological products, training procedures, participants (clinicians, methodologists, patients) and outcomes, among others. Methodological handbooks, in special the HB focused on Patient involvement in rare diseases.
-Clinical profile. Experience from a clinical expert collaborating with the clinical guidelines’ development in rare diseases. Need of having clinical documents based on the evidence for the diagnosis and treatment of rare diseases. Applicability, utility, collaboration and support.
-Patient outcomes. Experience in patients with rare diseases from the industry´s point of view (PROMS and PREMS). Challenges of applying the evidence assessment framework evidence-based medicine in rare diseases.
-Worldwide Guidelines and evidence generation: 1 expert from the international perspective
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