European Academy of Neurology Guidance for Developing and Reporting Clinical Practice Guidelines on Rare Neurological Diseases

Background and purpose: Rare diseases affect up to 29 million people in the European Union, and almost 50% of them affect the nervous system or muscles. Delays in diagnosis and treatment onset and insufficient treatment choices are common. Clinical practice guidelines (CPGs) may improve the diagnosis and treatment of patients and optimize care pathways, delivering the best scientific evidence to all clinicians treating these patients. Recommendations are set for developing and reporting high-quality CPGs on rare neurological diseases (RNDs) within the European Academy of Neurology (EAN), through a consensus procedure. Methods: A group of 27 experts generated an initial list of items that were evaluated through a two-step Delphi consensus procedure and a face-to-face meeting. The final list of items was reviewed by an external review group of 58 members. Results: The consensus procedure yielded 63 final items. Items are listed according to the domains of the AGREE instruments and concern scope and purpose, stakeholder involvement, rigour of development, and applicability. Additional items consider reporting and ethical issues. Recommendations are supported by practical examples derived from published guidelines and are presented in two tables: (1) items specific to RND CPGs, and general guideline items of special importance for RNDs, or often neglected; (2) items for guideline development within the EAN. Conclusions: This guidance aims to provide solutions to the issues specific to RNDs. This consensus document, produced by many experts in various fields, is considered to serve as a starting point for further harmonization and for increasing the quality of CPGs in the field of RNDs

Las Humanidades y el mundo profesional. Crónica de las mesas redondas

La I Jornada sobre les Professions de les Humanitats en la Societat del Coneixement, organitzada pels Estudis d'Humanitats i Filologia de la UOC, que va tenir lloc el passat 1 d'octubre de 2003, va constar de tres taules rodones: "Les Humanitats en el segle xxi", "Expectatives i sortides professionals dels llicenciats i llicenciades" i "Les Humanitats vistes des del món laboral i professional". En aquest document, elaborat per estudiants de la titulació d'Humanitats de la UOC, es recullen en forma de crònica els aspectes que els autors han considerat més rellevants de les aportacions que van fer els ponents de la segona i la tercera taules rodones, ambdues centrades en la relació entre els estudis d'Humanitats i el món laboral. Text complet (PDF)The 1st Conference on Humanities Professions in the Knowledge Society, organised by the UOC's Humanities and Philology department, took place on October 1st 2003 and was made up of three round tables: "The Humanities in the 21st century", "Professional openings and expectations for graduates" and "The humanities seen from a professional and employment perspective". This document, produced by students of the UOC's Humanities degree, compiles in a report the aspects that the authors believe to be most important from the contributions made by the speakers at the second and third round tables, which both focused on the relations between the study of the Humanities and the world of employment. Full text (PDF | In Catalan)La I Jornada sobre las Profesiones de las Humanidades en la Sociedad del Conocimiento, organizada por los Estudios de Humanidades y Filología de la UOC, que se celebró el pasado 1 de octubre de 2003, constó de tres mesas redondas: "Las Humanidades en el siglo xxi", "Expectativas y salidas profesionales de los licenciados y licenciadas" y "Las Humanidades vistas desde el mundo laboral y profesional". En este documento, elaborado por estudiantes de la propia titulación de Humanidades de la UOC, se reúnen en forma de crónica los aspectos que los autores han considerado más relevantes de las aportaciones que hicieron los ponentes de la segunda y la tercera de las mesas redondas, ambas centradas en la relación entre los estudios de Humanidades y el mundo laboral. Texto completo (PDF | En catalán

Crònica de les taules rodones

La I Jornada sobre las Profesiones de las Humanidades en la Sociedad del Conocimiento, organizada por los Estudios de Humanidades y Filología de la UOC, que se celebró el pasado 1 de octubre de 2003, constó de tres mesas redondas: "Las Humanidades en el siglo xxi", "Expectativas y salidas profesionales de los licenciados y licenciadas" y "Las Humanidades vistas desde el mundo laboral y profesional". En este documento, elaborado por estudiantes de la propia titulación de Humanidades de la UOC, se reúnen en forma de crónica los aspectos que los autores han considerado más relevantes de las aportaciones que hicieron los ponentes de la segunda y la tercera de las mesas redondas, ambas centradas en la relación entre los estudios de Humanidades y el mundo laboral

Crònica de les taules rodones

La I Jornada sobre las Profesiones de las Humanidades en la Sociedad del Conocimiento, organizada por los Estudios de Humanidades y Filología de la UOC, que se celebró el pasado 1 de octubre de 2003, constó de tres mesas redondas: "Las Humanidades en el siglo xxi", "Expectativas y salidas profesionales de los licenciados y licenciadas" y "Las Humanidades vistas desde el mundo laboral y profesional". En este documento, elaborado por estudiantes de la propia titulación de Humanidades de la UOC, se reúnen en forma de crónica los aspectos que los autores han considerado más relevantes de las aportaciones que hicieron los ponentes de la segunda y la tercera de las mesas redondas, ambas centradas en la relación entre los estudios de Humanidades y el mundo laboral

Prioritization process for European Academy of Neurology clinical practice guidelines.

BACKGROUND AND PURPOSE The development of high-quality clinical practice guidelines (CPGs) takes substantial time, effort, and resources. During the past years, the European Academy of Neurology (EAN) guideline production was significantly increased, so the need to develop clear, transparent, and methodologically solid criteria for prioritizing guideline topics became apparent. With this paper, we aim to define a set of criteria to be applied for prioritizing topics for future EAN guidelines, as well as the procedure for their implementation. METHODS After review of the literature, we identified a recent systematic review that reported on the main prioritization criteria used by health organizations. Based on these, we developed a list of 20 preliminary criteria, which were voted on through a Delphi consensus procedure, including 160 stakeholders. Finally, we established a working procedure on how to submit and select new guideline topic proposals within the EAN. This procedure was reviewed by the EAN Scientific Committee and the Board. RESULTS The first round, 61.3% of the participants voted, and 86% of them participated in the second round. Seven criteria were approved with this procedure. After the selection of the criteria, a prioritization procedure was launched, and the first 30 topics are reported in this paper. This bottom-up process that involved the whole EAN community was followed by a top-down process, using additional criteria for further selection by the EAN board members. CONCLUSIONS We describe the development of prioritization criteria to be applied in the process of topic selection for future EAN CPGs. We will perform regular reviews and adjustments of the process

Guidelines should be guidelines: Time to leave the terms "consensus" and "position" for other purposes.

© 2021 European Academy of Neurology.Clinical guidelines are “statements that include recommendations, intended to optimize patient care, that are informed by a systematic review of evidence and an assessment of the benefits and harms of alternative care options”. Clinical guidelines are increasingly becoming a part of neurology clinical practice, most probably because they may improve patient clinical outcomes. Methods and strategies intended to increase guideline availability include electronic and computable guidelines integrated into process-oriented information systems with clinical decision support tools. The increased availability and the possibility of continuous update (living guidelines) will likely contribute to promoting compliance with guideline recommendations and to the overarching success of guidelines in improving the quality of care in the near future.info:eu-repo/semantics/publishedVersio

European Academy of Neurology guidance for developing and reporting clinical practice guidelines on rare neurological diseases

© 2022 European Academy of NeurologyBackground and purpose: Rare diseases affect up to 29 million people in the European Union, and almost 50% of them affect the nervous system or muscles. Delays in diagnosis and treatment onset and insufficient treatment choices are common. Clinical practice guidelines (CPGs) may improve the diagnosis and treatment of patients and optimize care pathways, delivering the best scientific evidence to all clinicians treating these patients. Recommendations are set for developing and reporting high-quality CPGs on rare neurological diseases (RNDs) within the European Academy of Neurology (EAN), through a consensus procedure. Methods: A group of 27 experts generated an initial list of items that were evaluated through a two-step Delphi consensus procedure and a face-to-face meeting. The final list of items was reviewed by an external review group of 58 members. Results: The consensus procedure yielded 63 final items. Items are listed according to the domains of the AGREE instruments and concern scope and purpose, stakeholder involvement, rigour of development, and applicability. Additional items consider reporting and ethical issues. Recommendations are supported by practical examples derived from published guidelines and are presented in two tables: (1) items specific to RND CPGs, and general guideline items of special importance for RNDs, or often neglected; (2) items for guideline development within the EAN. Conclusions: This guidance aims to provide solutions to the issues specific to RNDs. This consensus document, produced by many experts in various fields, is considered to serve as a starting point for further harmonization and for increasing the quality of CPGs in the field of RNDs.info:eu-repo/semantics/publishedVersio