Muscle Diseases

Guidelines – Gap analysis

 

  • Existing
    • DMD (2009) – DMD Care Considerations Working Group diagnosis and management
    • Limb girdle and distal muscular dystrophies (2014) – AAN – diagnosis and management
    • DM1/DM2 (2012) – Best practice guideline on molecular diagnosis
    • DM2 (2010) – ENMC – diagnosis and management
    • FSHD (2015) – AAN – diagnosis and management
    • CMD (2015) – AAN – diagnosis and management
    • DMD corticosteroid treatment (2016) – AAN
    • Two care guidelines for DM1 and DM2 in progress with the American DM MDF foundation (easily adoptable to European situation as many European doctors were involved)
    • Guideline on diagnosis and management in IBM in progress (Rose et al., Delphi process, AGREE)

 

  • Non existing
    • MFM
    • Idiopathic inflammatory myopathies

 

Collaboration with Re-CONNECT via Jens Schmidt and MetabERN via Antonio Toscano and Nadine van de Beek/Ans van der Ploeg

 

Name Organisation
Emilio Albamonte Nemo Clinical Center
Guja Astrea Azienda Ospedaliera Universitaria Pisana (AOUP)
Shahram Attarian AP-HM
Giovanni Baranello Fondazione IRCCS, Istituto Neurologico C.Besta
Pia Bernasconi Fondazione IRCCS, Istituto Neurologico C.Besta
Gianna Berti Azienda Ospedaliera Universitaria Senese
Enrico Bertini Ospedale Bambino Gesu IRCCS
Sonia Blanch Hospital Universitario y Politécnico La Fe
Astrid Blaschek Department of pediatric Neurology, Dr.v. Hauner Childrens hospital, Ludwig Maximilians University
Joachim Brites PAB
Esther Brussel Erasmus MC University Hospital
Gunnar Buyse University Hospitals Leuven, Neuromuscular Reference Centre
Elena Cardaioli Azienda Ospedaliera Universitaria Senese
Filomena Caria ASST “Spedali Civili”
Elena Carrado Nemo Clinical Center
Conti Caterina Nemo Clinical Center
Michela Catteruccia Ospedale Bambino Gesu IRCCS
Brigitte Chabrol AP-HM
Teodora Chamova Expert Centre for Hereditary Neurologic and Metabolic Disorders
Lucia Chico Azienda Ospedaliera Universitaria Pisana (AOUP)
Kristl Claeys University Hospitals Leuven, Neuromuscular Reference Centre
Giacomo Comi Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico Milano (University Hospital Italy)
Sandra Coppens Centre de Référence Neuromusculaire Erasme-HUDERF, Université Libre de Bruxelles
Sian Craig Great Ormond Street Hospital
Adele D’Amico Ospedale Bambino Gesu IRCCS
Trak Davis Great Ormond Street Hospital
Liesbeth De Waele University Hospitals Leuven, Neuromuscular Reference Centre
Nicolas Deconinck Centre de Référence Neuromusculaire Erasme-HUDERF, Université Libre de Bruxelles
Isabelle Desguerre Hôpital Raymond Poincaré, 92380 GARCHES
Valeri Dhetz CHU NICE
Jordi Díaz Manera Hospital de la Santa Creu i Sant Pau
Maria Terersa Dotti Azienda Ospedaliera Universitaria Senese
Filip Eftimov AMC Amsterdam
Louise Emerson Great Ormond Street Hospital
Teresinha Evangelista Newcastle upon Tyne Hospitals NHS Foundation Trust
Jozsef Janszky University of Pécs
Elisa Falcier Nemo Clinical Center
Massimiliano Filosto ASST “Spedali Civili”
Giuseppe Fiorentino University Hospital “Luigi Vanvitelli”
Jane Freebody Oxford University Hospitals NHS Foundation Trust
Alain Furby Rhône Alpes neuromuscular center
Eduard Gallardo Hospital de la Santa Creu i Sant Pau
Josep Gamez Hospital Universitari Vall d’Hebron
Jeremy Garcia CHU NICE
Francesca Gimigliano University Hospital “Luigi Vanvitelli”
Nathalie Goemans University Hospitals Leuven, Neuromuscular Reference Centre
Tanja Golli University Medical Center Ljubljana
Cristina Grandi Nemo Clinical Center
Michela Guglieri Newcastle upon Tyne Hospitals NHS Foundation Trust
Kinga Hadzsiev University of Pécs
David Hilton-Jones Oxford University Hospitals NHS Foundation Trust
Tomas Horak University Hospital Brno
Eugenia Ibáñez Hospital Universitario y Politécnico La Fe
Anna Kaminska SPCSK, Department of Neurology, Medical University of Warsaw,Banacha 1a Warsaw
Biruta Kierdaszuk SPCSK, Department of Neurology, Medical University of Warsaw,Banacha 1a Warsaw
Diana Kim FSHD EU
Heike Koelbel Childrens Clinic Essen University Hospital (University Hospital Germany)
Anna Kostera-Pruszczyk SPCSK, Department of Neurology, Medical University of Warsaw,Banacha 1a Warsaw
Norbert Kovacs University of Pécs
Madelon Kroneman Spierziekten Nederland – Neuromuscular Association Netherlands
Pascal Laforet Hôpital Raymond Poincaré, 92380 GARCHES
François Lamy AFM-Téléthon
Diana Lehmann Universitätsklinikum Ulm (UKU) in cooperation with the Universitäts- und Rehabilitationskliniken Ulm (RKU)
Christopher Lindberg Sahlgrenska University Hospital (University Hospital Sweden)
Hanns Lochmüller Medical Center – University of Freiburg (University Hospital Germany)
Sara Luppone Nemo Clinical Center
Anna Lusakowska SPCSK, Department of Neurology, Medical University of Warsaw,Banacha 1a Warsaw
Lorenzo Maggi Fondazione IRCCS, Istituto Neurologico C.Besta
Marion Main Great Ormond Street Hospital
Alessandro Malandrini Azienda Ospedaliera Universitaria Senese
Edoardo Malfatti Hôpital Raymond Poincaré, 92380 GARCHES
Martial Mallaret Rhône Alpes neuromuscular center
Cecilia Jimenez Mallebrera Hospital Sant Joan de Déu – Universidad de Barcelona
Adnan Manzur Great Ormond Street Hospital
Chiara Marini Bettolo Newcastle upon Tyne Hospitals NHS Foundation Trust
Iatomasi Marino Nemo Clinical Center
Nicolas Mavroudakis Centre de Référence Neuromusculaire Erasme-HUDERF, Université Libre de Bruxelles
Anna Mayhew Newcastle upon Tyne Hospitals NHS Foundation Trust
Radim Mazanec Faculty Hospital Motol, Prague
Elena Mazzone Fondazione Policlinico Universitario A. Gemelli
Bela Melegh University of Pécs
Eugenio Mercuri Fondazione Policlinico Universitario A. Gemelli
James Miller Newcastle upon Tyne Hospitals NHS Foundation Trust
Massimiliano Mirabella Fondazione Policlinico Universitario A. Gemelli
Maria Judit Molnar Semmelweis University
Marcellino Monda University Hospital “Luigi Vanvitelli”
Tiziana Mongini Azienda Ospedaliera Universitaria Città della Salute edella Scienza di Torino
Vincenzo Montano Azienda Ospedaliera Universitaria Pisana (AOUP)
Marisol Montolio) Duchenne Parent Project Spain
Marina Mora Fondazione IRCCS, Istituto Neurologico C.Besta
Valentina Morettini Nemo Clinical Center
Isabella Moroni Fondazione IRCCS, Istituto Neurologico C.Besta
Lenka Mrazova University Hospital Brno
Nuria Muelas Hospital Universitario y Politécnico La Fe
Wolfgang Müller-Felber Department of pediatric Neurology, Dr.v. Hauner Childrens hospital, Ludwig Maximilians University
Francina Munell Hospital Universitari Vall d’Hebron
Cristina Muntean Karolinska Universitetssjukhuset (University Hospital Sweden)
Pinki Muntoni Great Ormond Street Hospital
Gerardo Nigro University Hospital “Luigi Vanvitelli”
Carlos Ortez Hospital Sant Joan de Déu – Universidad de Barcelona
Endre Pál University of Pécs
Francesc Palau Hospital Sant Joan de Déu – Universidad de Barceona
Alberto Palladino University Hospital “Luigi Vanvitelli”
Carmen Paradas Complejo Hospitalario Regional Virgen del Rocío (Regional Hospital Spain)
Pasquale Esposito University Hospital “Luigi Vanvitelli”
Marina Pedemonte Istituto Gaslini
Elena Pegoraro Azienda Ospedaliera – University of Padova
Borut Peterlin University Medical Center Ljubljana
Philippe Petiot Rhône Alpes neuromuscular center
Lorenzo Peverelli Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico Milano (University Hospital Italy)
Zoltan Pfund University of Pécs
Rhaul Phadke Great Ormond Street Hospital
Inmaculada Pitarch Hospital Universitario y Politécnico La Fe
Luisa Politano University Hospital ” Luigi Vanvitelli”
Anna Potulska-Chromik SPCSK, Department of Neurology, Medical University of Warsaw,Banacha 1a Warsaw
Angela Puma CHU NICE
Peter Reilich Friedrich-Baur-Institute, Klinikum der LMU Munich
Jens Reimann University Hospital of Bonn
Gauthier Remiche Centre de Référence Neuromusculaire Erasme-HUDERF, Université Libre de Bruxelles
Enzo Ricci Fondazione Policlinico Universitario A. Gemelli
Federica Ricci Azienda Ospedaliera Universitaria Città della Salute edella Scienza di Torino
Giulia Ricci Azienda Ospedaliera Universitaria Pisana (AOUP)
Angela Rosenbohm Universitätsklinikum Ulm (UKU) in cooperation with the Universitäts- und Rehabilitationskliniken Ulm (RKU)
Sabrina Sacconi CHU NICE
Emmanuelle Salort-Campana AP-HM
Maria Salvado Hospital Universitari Vall d’Hebron
Anna Sarkozy Great Ormond Street Hospital
Stefano Sartori Azienda Ospedaliera – University of Padova
Ulrike Schara Childrens Clinic Essen University Hospital (University Hospital Germany)
Jens Schmidt University Medical Center Gottingen
Carola Schön Department of pediatric Neurology, Dr.v. Hauner Childrens hospital, Ludwig Maximilians University
Benedikt Schoser Friedrich-Baur-Institute, Klinikum der LMU Munich
Monica Sciacco Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico Milano (University Hospital Italy)
Thomas Sejersen Karolinska Universitetssjukhuset (University Hospital Sweden)
Serenella Servidei Fondazione Policlinico Universitario A. Gemelli
Gabriele Siciliano Azienda Ospedaliera Universitaria Pisana (AOUP)
Costanza Simoncini Azienda Ospedaliera Universitaria Pisana (AOUP)
Volker Straub Newcastle upon Tyne Hospitals NHS Foundation Trust
Agnes Till University of Pécs
Albena Todorova Expert Centre for Hereditary Neurologic and Metabolic Disorders
Antonio Toscano AOU Policlinico “G.Martino” Messina
Ivailo Tournev Expert Centre for Hereditary Neurologic and Metabolic Disorders
Federica Trucco Istituto Gaslini
Sansone Valeria Nemo Clinical Center
Peter Van den Bergh University Hospital St-Luc
Nadine van der Beek Erasmus MC University Hospital
Anneke van der Kooi AMC Amsterdam
Ans van der Ploeg Erasmus MC University Hospital
Judit Varadine Csapo PAB
Liliana Vercelli Azienda Ospedaliera Universitaria Città della Salute edella Scienza di Torino
Juan Vílchez Hospital Universitario y Politécnico La Fe
Katharina Vill Department of pediatric Neurology, Dr.v. Hauner Childrens hospital, Ludwig Maximilians University
Luisa Villa CHU NICE
Giuseppe Vita AOU Policlinico “G.Martino” Messina
Sibylle Vogt Medical Center – University of Freiburg (University Hospital Germany)
Stanislav Vohanka University Hospital Brno
Maggie Walter Friedrich-Baur-Institute, Klinikum der LMU Munich
Therese Well Department of pediatric Neurology, Dr.v. Hauner Childrens hospital, Ludwig Maximilians University
Alice Zanolini Nemo Clinical Center
Judith Zima University of Pécs
Olesja Parmova University Hospital Brno
Daniela Botikova University Hospital Brno
Luigia Passamano University Hospital “Luigi Vanvitelli”
Léonard Féasson Rhône Alpes Neuromuscular Center
Arnaud Lacour Rhône Alpes Neuromuscular Center

The ERNs are co-funded by the
European Union (Health Programme and CEF)

EU Commission


“EURO-NMD is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Union (Health Programme and CEF).
For more information about the ERNs and the EU health strategy,
please visit ec.europa.eu/health/ern