Awareness of bone strength in patients with neuromuscular disorders: ERN EURO-NMD clinician survey and European patient survey

Authors:

M T A Kruse 1 , B A S Olde Dubbelink 2 , M Kroneman 3 , I de Groot 3 , S Schlüter 4 , M de Visser 5 , T Evangelista 6 , A Moretti 7 , D Weber 8 , L M Ward 9 , N C Voermans 10 ; EURO-NMD Bone Strength Study Group

EURO-NMD Bone Strength Study Group: A D’Amico 11 , J Baets 12 , M Baumann 13 , N van der Beek 14 , J De Bleecker 15 , A Bruijnes 16 , K Claeys 17 , C Bruno 18 , M Dambrauskiene 19 , E D’Errico 20 , M Filosto 21 , M Gosk-Tomek 22 , S Herdewyn 23 , C Kornblum 24 , A Kostera-Pruszczyk 25 , L Maggi 26 , F Manganelli 27 , W Mueller-Felber 28 , F Munell 29 , A Nadaj-Pakleza 30 , A Nascimento 31 , M Olive 32 , K Ørstavik 33 , J Palmio 34 , E Pegoraro 35 , B Peterlin 36 , A T van der Ploeg 37 , S Quijano-Roy 38 , G Remiche 39 , G Ricci 40 , M Rohlenová 41 , A Rosenbohm 42 , S Sacconi 43 , V Sansone 44 , M Santos 45 , U Schara-Schmidt 46 , S Servidei 47 , G Siciliano 48 , D Soler 49 , T Stojkovic 50 , L Vali 51 , J Verschuuren 52 , K Viktorija 53 , R I Wadman 54 , M C Walter 55 , C Weiss 56 , E Zamba-Papanicolaou 57 , A Zambon 58

Affiliations

1 Faculty of Medicine, University of Groningen, the Netherlands; Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, Nijmegen, the Netherlands.
2 Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, Nijmegen, the Netherlands.
3 Lt.gen. Van Heutszlaan 63743 JN Baarn, The Netherlands.
4 Diagnosegruppe Myositis (German Patient Support Group for Myositis), Germany.
5 Department of Neurology, Amsterdam University Medical Centre, the Netherlands.
6 Unité de Morphologie Neuromusculaire, Institut de Myologie, Paris, France.
7 Department of Medical and Surgical Specialties and Dentistry, University of Campania Luigi Vanvitelli, Naples, Italy.
8 Department of Pediatrics, Endocrinology, The Children’s Hospital of Philadelphia and the Perelman School of Medicine at the University of Pennsylvania, USA.
9 Department of Pediatrics, Division of Endocrinology and Metabolism, Children’s Hospital of Eastern Ontario, and University of Ottawa, Ottawa, ON, Canada.
10 Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, Nijmegen, the Netherlands. Electronic address: Nicol.Voermans@radboudumc.nl.
11 Bambino Gesu’ Children’s Research Hospital IRCCS, Unit of Neuromuscular and Neurodegenerative Disorders, Piazza S. Onofrio, 4, Rome 00146, Italy. Electronic address: adele2.damico@opbg.net.
12 Antwerp University Hospital, Drie Eikenstraat 655, 2650 Edegem, Belgium. Electronic address: jonathan.baets@uantwerpen.be.
13 Institute of Human Genetics, Medical University Innsbruck, Peter-Mayr-Straße 1, Innsbruck, Tirol 6020, Austria. Electronic address: matthias.baumann@tirol-kliniken.at.
14 Erasmus MC University Medical Center,Gravendijkwal 230 Postbus 2040 Rotterdam, Zuid-Holland 3000, CA, Netherlands. Electronic address: n.beek@erasmusmc.nl.
15 University Hospital Gent, UZ Gent De Pintelaan 185, Gent 9000, Belgium. Electronic address: jan.debleecker@ugent.be.
16 Maastricht University Medical Centre+, PO Box 500, Maastricht, Limburg 6202, AZ, Netherlands. Electronic address: anne.bruijnes@mumc.nl.
17 Gaslini Institute, Largo Gaslini 5, Genova 16147, Italy. Electronic address: Kristl.Claeys@uzleuven.be.
18 University Hospitals Leuven, Neuromuscular Reference Centre, Department of Neurology and Department of Neuropediatrics, Herestraat 49, Leuven B- 3000, Belgium. Electronic address: claudiobruno@gaslini.org.
19 Hospital of Lithuanian University of Health Sciences Kauno Klinikos Eiveniu, Kaunas LT-50161, Lithuania. Electronic address: milda.dambrauskiene@kaunoklinikos.lt.
20 Aou Policlinico Consorziale Bari, Piazza Giulio Cesare, 11, 70124 Bari, BA, Italy. Electronic address: eustachio.derrico@policlinico.ba.it.
21 Center for Neuromuscular Diseases, Unit of Neurology, ASST “Spedali Civili”, P.le Spedali Civili 1 Brescia, Lombardia 25100, Italy. Electronic address: massimiliano.filosto@unibs.it.
22 Center for Neuromuscular Disorders/Dept. Paediatrics at the Emperor Franz Josef-Hospital with Gottfried Preyers Children’s Hospital Vienna, Kundratstrasse 3, A-1100 Vienna, Austria. Electronic address: magdalena.gosk-tomek@gesundheitsverbund.at.
23 University Hospital Gent, UZ Gent De Pintelaan 185, Gent 9000, Belgium. Electronic address: Sarah.Herdewyn@uzgent.be.
24 University Hospital Bonn, Department of Epileptology, Venusberg Campus 1, Bonn, North Rhine-Westphalia, Germany. Electronic address: Cornelia.Kornblum@ukbonn.de.
25 SPCSK, Medical University of Warsaw, Poland. Electronic address: anna.kostera-pruszczyk@wum.edu.pl.
26 Fondazione IRCCS, Istituto Neurologico C.Besta, Via Celoria 11, Milan, Lombardia 20133, Italy. Electronic address: lorenzo.maggi@istituto-besta.it.
27 University of Campania “Luigi Vanvitelli” – University Hospital “Luigi Vanvitelli”,Via Santa Maria di Costantinopoli, 104, Naples 80138, NA, Italy. Electronic address: fiore.manganelli@unina.it.
28 Friedrich-Baur-Institute, Dept. of Neurology, Ludwig-Maximilians-University of Munich, Ziemssenstraße 1, 80336 Munich, Bavaria, Germany. Electronic address: wolfgang.mueller-felber@med.uni-muenchen.de.
29 Vall Hebron, Hospital Universitari Vall d’ Hebron, Passeig Vall de Hebron 119, Barcelona 08035, Barcelona, Spain. Electronic address: francina.munell@vhir.org.
30 University Hospital of Strasbourg – Neuromuscular Centre at Hautepierre Hospital, Avenue Molière, Strasbourg, France. Electronic address: aleksandra.nadaj-pakleza@chru-strasbourg.fr.
31 Hospital Sant Juan de Déu Universidad de Barcelona, Passaig Sant Joan de Diu, Nro2 Esplugues, Spain 08950, Spain. Electronic address: andres.nascimento@sjd.es.
32 Hospital de la Santa Creu i Sant Pau, Carrer de Sant Antoni Maria Claret, 167, 08025 Barcelona, Spain. Electronic address: molivep@santpau.cat.
33 Oslo University Hospital and the National Consortium on Rare Neuromuscular disorders,Sognsvannsveien 20, Oslo, Norway. Electronic address: krorstav@ous-hf.no.
34 Tampere University Hospital, Teiskontie 35, Tampere, Finland. Electronic address: johanna.palmio@tuni.fi.
35 Azienda Ospedaliera Padova (AOP), Via Nicolò Giustiniani, 2, Padua 35128, Province of Padua, Italy. Electronic address: elena.pegoraro@unipd.it.
36 University Medical Center Ljubljana, 7 Zaloška cesta, Ljubljana 1000, Slovenia. Electronic address: borut.peterlin@kclj.si.
37 Erasmus MC University Medical Center,Gravendijkwal 230 Postbus 2040, Rotterdam, Zuid-Holland 3000 CA, Netherlands. Electronic address: a.vanderploeg@erasmusmc.nl.
38 University Hospital Raymond-Poincaré APHP, 104 Boulevard Raymond Poincaré, Garches, Ile de 92380, France. Electronic address: susana.quijano-roy@aphp.fr.
39 Centre de Référence Neuromusculaire Erasme-HUDERF, route de Lennik, 808, Brussels 1070, Belgium. Electronic address: gauthier.remiche@hubruxelles.be.
40 Azienda Ospedaliero-Universitaria Pisana, U.O.C. Neurologia, via Roma 67- 56126 Pisa U.O.C. Neurologia, Ospedale Santa Chiara, Pisa, Toscana 56126, Italy. Electronic address: giulia.ricci@unipi.it.
41 Faculty Hospital Motol, V Úvalu 84, Motol, Prague, Czechia. Electronic address: Marie.Rohlenova@fnmotol.cz.
42 Universitätsklinikum Ulm (UKU) in cooperation with the Universitäts und Rehabilitationskliniken Ulm (RKU), Albert-Einstein-Allee 23, Ulm, Germany. Electronic address: angela.rosenbohm@uni-ulm.de.
43 CHU Nice, Pasteur 2, 30 Voie Romaine Zone C, Nice, Alpes Maritimes 06000, France. Electronic address: SACCONI.S@chu-nice.fr.
44 Nemo Clinical Center, Piazza Ospedale Maggiore, 3, Milan, Italy. Electronic address: valeria.sansone@centrocliniconemo.it.
45 CHU Porto, Largo Prof. Abel Salazar, 4099-001 Porto, Portugal. Electronic address: msantos.dia@chporto.min-saude.pt.
46 University Clinic Essen, Hufelandstraße 55, Essen, NRW 45122, Germany. Electronic address: ulrike.schara-schmidt@uk-essen.de.
47 Fondazione Policlinico Universitario A. Gemelli, Largo Agostino Gemelli, 8, Rome 00168, Italy. Electronic address: serenella.servidei@policlinicogemelli.it.
48 Azienda Ospedaliero-Universitaria Pisana, U.O.C. Neurologia, Via Roma, 67, Pisa 56126, Province of Pisa, Italy. Electronic address: g.siciliano@med.unipi.it.
49 WF2G+PH6, Triq Dun Karm, L-Imsida, MSD 2090, Malta. Electronic address: tanya.stojkovic@aphp.fr.
50 Pitié Salpêtrière Hospital – Assistance Public Hopitaux de Paris, 47-83 Boulevard de l’Hôpital, Paris, France. Electronic address: tanya.stojkovic@aphp.fr.
51 Tartu University Hospital, Tartu University Hospital, Ludvig Puusepa, Tartu, Estonia. Electronic address: liis.vali@kliinikum.ee.
52 Leiden University Medical Center, the Netherlands. Electronic address: j.j.g.m.verschuuren@lumc.nl.
53 Children Clinical University Hospital, Vienības gat. 45, Zemgales priekšpilsēta, Rīga LV-1004, Latvia.
54 University Medical Centre Utrecht, Heidelberglaan 100, 3584 CX Utrecht, Netherlands. Electronic address: R.I.Wadman@umcutrecht.nl.
55 Friedrich-Baur-Institute, Dept. of Neurology, Ludwig-Maximilians-University of Munich, Ziemssenstraße 1, 80336 Munich, Bavaria, Germany. Electronic address: maggie.walter@lrz.uni-muenchen.de.
56 Charité – Universitätsmedizin Berlin, Augustenburger Platz 1, Berlin 13353, Germany. Electronic address: claudia.weiss@charite.de.
57 IRCCS Ospedale San Raffaele, Via Olgettina, 60, Milan, Italy. Electronic address: ezamba@cing.ac.cy.
58 The Cyprus Foundation for Muscular Dystrophy Research, 6 Iroon Avenue 2371, Nicosia, Cyprus. Electronic address: zambon.alberto@hsr.it.