European Academy of Neurology guidance for developing and reporting clinical practice guidelines on rare neurological diseases
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European Academy of Neurology guidance for developing and reporting clinical practice guidelines on rare neurological diseases. / Aleksovska, Katina; Kobulashvili, Teia; Costa, Joao; Zimmermann, Georg; Ritchie, Karen; Reinhard, Carola; Vignatelli, Luca; Fanciulli, Alessandra; Damian, Maxwel; Pavlakova, Lucia; Burgunder, Jean-Marc; Kopishinskaya, Svetlana; Rakusa, Martin; Kovacs, Norbert; Erdogan, Fusun Ferda; Linton, Lori Renna; Copetti, Massimiliano; Lamperti, Costanza; Servidei, Serenella; Evangelista, Theresina; Ayme, Segolene; Pareyson, Davide; Sellner, Johann; Krarup, Christian; de Visser, Marianne; van den Bergh, Peter; Toscano, Antonio; Graessner, Holm; Berger, Thomas; Bassetti, Claudio; Vidailhet, Marie; Trinka, Eugene; Deuschl, Guenther; Federico, Antonio; Leone, Maurizio A.
In: European Journal of Neurology, Vol. 29, No. 6, 2022, p. 1571-1586.Research output: Contribution to journal › Review › Research › peer-review
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TY - JOUR
T1 - European Academy of Neurology guidance for developing and reporting clinical practice guidelines on rare neurological diseases
AU - Aleksovska, Katina
AU - Kobulashvili, Teia
AU - Costa, Joao
AU - Zimmermann, Georg
AU - Ritchie, Karen
AU - Reinhard, Carola
AU - Vignatelli, Luca
AU - Fanciulli, Alessandra
AU - Damian, Maxwel
AU - Pavlakova, Lucia
AU - Burgunder, Jean-Marc
AU - Kopishinskaya, Svetlana
AU - Rakusa, Martin
AU - Kovacs, Norbert
AU - Erdogan, Fusun Ferda
AU - Linton, Lori Renna
AU - Copetti, Massimiliano
AU - Lamperti, Costanza
AU - Servidei, Serenella
AU - Evangelista, Theresina
AU - Ayme, Segolene
AU - Pareyson, Davide
AU - Sellner, Johann
AU - Krarup, Christian
AU - de Visser, Marianne
AU - van den Bergh, Peter
AU - Toscano, Antonio
AU - Graessner, Holm
AU - Berger, Thomas
AU - Bassetti, Claudio
AU - Vidailhet, Marie
AU - Trinka, Eugene
AU - Deuschl, Guenther
AU - Federico, Antonio
AU - Leone, Maurizio A.
PY - 2022
Y1 - 2022
N2 - 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.
AB - 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.
KW - AGREE
KW - consensus
KW - Delphi
KW - guideline
KW - neurology
KW - rare diseases
KW - recommendation
KW - INTERNATIONAL NETWORK
KW - MANAGEMENT
KW - CONSENSUS
KW - RECOMMENDATIONS
KW - DIAGNOSIS
KW - QUALITY
KW - GRADE
KW - STANDARDS
KW - THERAPY
U2 - 10.1111/ene.15267
DO - 10.1111/ene.15267
M3 - Review
C2 - 35318776
VL - 29
SP - 1571
EP - 1586
JO - European Journal of Neurology
JF - European Journal of Neurology
SN - 1351-5101
IS - 6
ER -
ID: 302149616