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; ... (2022). European Academy of Neurology guidance for developing and reporting clinical practice guidelines on rare neurological diseases. European journal of neurology, 29(6), pp. 1571-1586. Wiley 10.1111/ene.15267

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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.

Item Type:

Journal Article (Review Article)

Division/Institute:

04 Faculty of Medicine > Department of Head Organs and Neurology (DKNS) > Clinic of Neurology

UniBE Contributor:

Burgunder, Jean-Marc and Bassetti, Claudio

Subjects:

600 Technology > 610 Medicine & health

ISSN:

1468-1331

Publisher:

Wiley

Language:

English

Submitter:

Pubmed Import

Date Deposited:

24 Mar 2022 11:22

Last Modified:

08 May 2022 00:16

Publisher DOI:

10.1111/ene.15267

PubMed ID:

35318776

Uncontrolled Keywords:

AGREE Delphi consensus guideline neurology rare diseases recommendation

BORIS DOI:

10.48350/167942

URI:

https://boris.unibe.ch/id/eprint/167942

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