European Academy of Neurology guidance for developing and reporting clinical practice guidelines on rare neurological diseases
| العنوان: | European Academy of Neurology guidance for developing and reporting clinical practice guidelines on rare neurological diseases |
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| المؤلفون: | Katina Aleksovska, Teia Kobulashvili, Joao Costa, Georg Zimmermann, Karen Ritchie, Carola Reinhard, Luca Vignatelli, Alessandra Fanciulli, Maxwel Damian, Lucia Pavlakova, Jean‐Marc Burgunder, Svetlana Kopishinskaya, Martin Rakusa, Norbert Kovacs, Fusun Ferda Erdogan, Lori Renna Linton, Massimiliano Copetti, Costanza Lamperti, Serenella Servidei, Theresina Evangelista, Segolene Ayme, Davide Pareyson, Johann Sellner, Christian Krarup, Marianne de Visser, Peter van den Bergh, Antonio Toscano, Holm Graessner, Thomas Berger, Claudio Bassetti, Marie Vidailhet, Eugene Trinka, Guenther Deuschl, Antonio Federico, Maurizio A. Leone |
| المساهمون: | Repositório da Universidade de Lisboa, Neurology, ANS - Neuroinfection & -inflammation |
| المصدر: | European journal of neurology, 29(6), 1571-1586. Wiley-Blackwell |
| سنة النشر: | 2022 |
| مصطلحات موضوعية: | AGREE, recommendation, consensus, neurology, Practice Guidelines as Topic, Humans, rare diseases, Neurology (clinical), Nervous System Diseases, 610 Medicine & health, Delphi, guideline |
| الوصف: | © 2022 European Academy of Neurology 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. |
| وصف الملف: | application/pdf |
| اللغة: | English |
| تدمد: | 1351-5101 |
| الوصول الحر: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::656400a6389d2f66ec5d4fad84207509Test http://www.scopus.com/inward/record.url?scp=85127364547&partnerID=8YFLogxKTest |
| حقوق: | OPEN |
| رقم الانضمام: | edsair.doi.dedup.....656400a6389d2f66ec5d4fad84207509 |
| قاعدة البيانات: | OpenAIRE |
| تدمد: | 13515101 |
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