European Academy of Neurology guidance for developing and reporting clinical practice guidelines on rare neurological diseases-Reference-Cited by-同舟云学术

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

Published:2022-03-23 Issue:6 Volume:29 Page:1571-1586
ISSN:1351-5101
Container-title:European Journal of Neurology
language:en
Short-container-title:Euro J of Neurology

Author:

Aleksovska Katina¹²³^ORCID,Kobulashvili Teia⁴,Costa Joao⁵^ORCID,Zimmermann Georg⁴⁶⁷,Ritchie Karen⁸,Reinhard Carola⁹¹⁰,Vignatelli Luca¹¹^ORCID,Fanciulli Alessandra¹²^ORCID,Damian Maxwel¹³^ORCID,Pavlakova Lucia¹,Burgunder Jean‐Marc¹⁴¹⁵^ORCID,Kopishinskaya Svetlana¹⁶,Rakusa Martin¹⁷^ORCID,Kovacs Norbert³¹⁸,Erdogan Fusun Ferda¹⁹,Linton Lori Renna²⁰,Copetti Massimiliano²¹,Lamperti Costanza²²,Servidei Serenella²³,Evangelista Theresina²⁴²⁵,Ayme Segolene²⁶,Pareyson Davide²⁷^ORCID,Sellner Johann²⁸^ORCID,Krarup Christian²⁹³⁰,de Visser Marianne³¹^ORCID,van den Bergh Peter³²^ORCID,Toscano Antonio³³,Graessner Holm⁹¹⁰,Berger Thomas³⁴,Bassetti Claudio³⁵,Vidailhet Marie⁹³⁶,Trinka Eugene⁴³⁷³⁸,Deuschl Guenther³⁹^ORCID,Federico Antonio⁹⁴⁰,Leone Maurizio A.²^ORCID

Affiliation:

1. European Academy of Neurology Vienna Austria

2. SC Neurology Department of Emergency and Critical Care Fondazione IRCCS ‘Casa Sollievo della Sofferenza’ San Giovanni Rotondo Italy

3. Clinic of Neurology Medical Faculty Ss. Cyril and Methodius University Skopje N. Macedonia

4. Department of Neurology Christian Doppler University Hospital Paracelsus Medical University, Affiliated Partner of the ERN EpiCARE Salzburg Austria

5. Laboratório de Farmacologia Clínica e Terapêutica Faculdade de Medicina Instituto de Medicina Molecular Universidade de Lisboa Lisboa Portugal

6. Team Biostatistics and Big Medical Data IDA Lab Salzburg Paracelsus Medical University Salzburg Austria

7. Department of Research and Innovation Paracelsus Medical University Salzburg Austria

8. Healthcare Improvement Scotland Glasgow UK

9. Institute for Medical Genetics and Applied Genomics University of Tübingen Tübingen Germany

10. Centre for Rare Diseases University Hospital Tübingen Tübingen Germany

11. IRCCS Istituto delle Scienze Neurologiche di Bologna Bologna Italy

12. Department of Neurology Medical University of Innsbruck Innsbruck Austria

13. Neurology and Neurointensive Care Cambridge University Hospitals and Ipswich Hospital Cambridge UK

14. Swiss Huntington Center Neurozentrum Siloah AG Gümligen Switzerland

15. Department of Neurology University of Bern Bern Switzerland

16. Nizhny Novgorod State Medical Academy Niznij Novgorod Russian Federation

17. Department of Neurology University Medical Centre Maribor Maribor Slovenia

18. Department of Neurology Medical School University of Pecs Pecs Hungary

19. Department of Neurology Erciyes University Melikgazi‐Kayseri Turkey

20. EuroHSP Federation of National Groups Related With Hereditary Spastic Paraplegia Paris France

21. Unit of Biostatistics Fondazione IRCCS ‘Casa Sollievo della Sofferenza’ San Giovanni Rotondo Italy

22. Division of Medical Genetics and Neurogenetics Fondazione IRCCS Istituto Neurologico C. Besta Milan Italy

23. Fondazione Policlinico Universitario IRCCS Roma Università Cattolica del Sacro Cuore Italy

24. Neuromuscular Morphology Unit Myology Institute Groupe Hospitalier Universitaire La Pitié‐Salpêtrière Paris France

25. AP‐HP Centre de Référence des Maladies Neuromusculaires Nord/Est/Ile de France Sorbonne Université ‐ Inserm UMRS 974 Paris France

26. Paris Brain Institute‐ICM, Inserm U 1127 CNRS UMR 7225 Sorbonne Universite Paris France

27. Unit of Rare Neurodegenerative and Neurometabolic Diseases Department of Clinical Neurosciences Fondazione IRCCS Istituto Neurologico Carlo Besta Milan Italy

28. Department of Neurology Landesklinikum Mistelbach‐Gänserndorf Mistelbach Austria

29. Clinical Neurophysiology Department of Clinical Neurophysiology Rigshospitalet Copenhagen Denmark

30. Department of Clinical Medicine and Department of Neuroscience University of Copenhagen Copenhagen Denmark

31. Department of Neurology Amsterdam University Medical Centre Amsterdam Neuroscience University of Amsterdam Amsterdam The Netherlands

32. Neuromuscular Reference Centre UCL St‐Luc University Hospital St‐Luc Brussels Belgium

33. Department of Clinical and Experimental Medicine Neurology and Neuromuscular Disorders Unit AOU Policlinico di Messina Messina Italy

34. Department of Neurology Medical University of Vienna Vienna Austria

35. Neurology Department Medical Faculty University Hospital Bern Switzerland

36. Department de Neurologie Institut du Cerveau‐Paris Brain Institute‐ICM Inserm, CNRS, AP‐HP, Hospital Salpetriere Sorbonne Université Paris France

37. Neuroscience Institute Centre for Cognitive Neuroscience Christian Doppler University Hospital Salzburg Austria

38. Department of Public Health, Health Services Research and Health Technology Assessment UMIT—University for Health Sciences, Medical Informatics and Technology Hall in Tirol Austria

39. Department of Neurology Christian Albrecht’s University Kiel Germany

40. Department Medicine, Surgery and Neurosciences Medical School University of Siena Siena Italy

Publisher

Wiley

Subject

Neurology (clinical),Neurology

Link

https://onlinelibrary.wiley.com/doi/pdf/10.1111/ene.15267

Reference55 articles.

1. European Commission.Communication from the Commission to the European Parliament the Council the European Economic and Social Committee and the Committee of the Regions on Rare Diseases. Europe’s Challenges (2009/C 151/02) published on 11.11.08.http://ec.europa.eu/health/ph threats/non com/docs/rare com en.pdf

2. Rare neurological diseases: A Pandora's box for neurology (an European and Italian perspective)

3. Survey of healthcare experiences of Australian adults living with rare diseases

4. A systematic literature review of evidence-based clinical practice for rare diseases: what are the perceived and real barriers for improving the evidence and how can they be overcome?

5. Diagnostic needs for rare diseases and shared prediagnostic phenomena: Results of a German-wide expert Delphi survey

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