P.7.2 Natural history of a steroid naive DMD cohort
Steffensen, B.F, Jeppesen, J, Werlauff, U, Rahbek, J
Published in Neuromuscular disorders : NMD (01.10.2013)
Published in Neuromuscular disorders : NMD (01.10.2013)
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G.P.304
Madsen, A, Rahbek, J, Werge, B, Marquardt, J, Gredal, O, Steffensen, B.F
Published in Neuromuscular disorders : NMD (01.10.2014)
Published in Neuromuscular disorders : NMD (01.10.2014)
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G.P.164
Werge, B, Rahbek, J, Madsen, A, Marquardt, J, Werlauff, U, Steffensen, B.F
Published in Neuromuscular disorders : NMD (01.10.2014)
Published in Neuromuscular disorders : NMD (01.10.2014)
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Journal Article
Health related quality of life in European adults with DMD: Results from the Care-NMD-project
Steffensen, B, Otto, C, Werlauff, U, Rahbek, J, Hoejberg, A, Kirschner, J, Vry, J, Gramsch, K
Published in Neuromuscular disorders : NMD (01.10.2015)
Published in Neuromuscular disorders : NMD (01.10.2015)
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TREAT-NMD (translational research in Europe, assessment and treatment for neuromuscular disorders)
Aartsma-Rus, A, Hoffman, E, Bucella, F, Flanigan, K, Kirschner, J, Kole, A, Mercuri, E, Nishino, I, North, K, Pereda Alonso, A, Rahbek, J, Sejersen, T, Wood, M, Lynn, S, Robertson, A, Lochmüller, H, Straub, V, Bushby, K
Published in NEUROMUSCULAR DISORDERS (2015)
Published in NEUROMUSCULAR DISORDERS (2015)
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Conference Proceeding
P4.64 Monitoring care practices for Duchenne Muscular Dystrophy – the CARE-NMD project
Gramsch, K, Vry, J, Rahbek, J, Steffensen, B, Bushby, K, Lochmüller, H, Rodger, S, Kirschner, J
Published in Neuromuscular disorders : NMD (01.10.2011)
Published in Neuromuscular disorders : NMD (01.10.2011)
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S.P.47 CARE-NMD: Evaluation and implementation of relevant health related QoL instruments in Duchenne muscular dystrophy
Rahbek, J, Højberg, A, Mahoney, A, Steffensen, B, Rodger, S, Bushby, K, Lochmüller, H, Gramsch, K, Vry, J, Kirschner, J, Antonova, V, Brabek, P, Guergueltcheva, V, Karcagi, V, Herczegfalvi, A, Kostera-Pruszczyk, A, Wasylyszyn, A, Lusakowska, A, Catlin, N, Stringer, S, Mrázová, L, Vondráèek, P
Published in Neuromuscular disorders : NMD (01.10.2012)
Published in Neuromuscular disorders : NMD (01.10.2012)
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S.P.59 Current care practice in Duchenne Muscular Dystrophy in Europe – results of the CARE-NMD cross-sectional survey
Vry, J, Gramsch, K, Rodger, S, Antonova, V, Brabec, P, Catlin, N, Garami, M, Guergueltcheva, V, Herczegfalvi, A, Kaminska, A, Karcagi, V, Kostera-Pruszczyk, A, Lusakowska, A, Mahoney, A, Mrázová, L, Pavlovská, L, Rahbek, J, Steffensen, B, Stringer, S, Tournev, I, Vondracek, P, Wasylyszyn, A, Bushby, K, Lochmüller, H, Kirschner, J
Published in Neuromuscular disorders : NMD (01.10.2012)
Published in Neuromuscular disorders : NMD (01.10.2012)
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DATABASES, REGISTRIES AND BIOMARKERS - POSTER PRESENTATIONS S.P.30 CARE-NMD: The role of patient registries in an international study of care in Duchenne muscular dystrophy
Rodger, S, Antonova, V, Brabec, P, Catlin, N, Garami, M, Gramsch, K, Guergueltcheva, V, Herczegfalvi, A, Kaminska, A, Karcagi, V, Kostera-Pruszczyk, A, Lusakowska, A, Mahoney, A, Mrázová, L, Pavlovská, L, Rahbek, J, Steffensen, B, Stringer, A, Tournev, I, Vondráček, P, Vry, J, Wasylyszyn, A, Kirschner, J, Bushby, K, Lochmüller, H
Published in Neuromuscular disorders : NMD (01.10.2012)
Published in Neuromuscular disorders : NMD (01.10.2012)
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Parents' Experiences of Information and Decision Making in the Care of Their Child With Severe Spinal Muscular Atrophy: A Population Survey
Beernaert, Kim, Lövgren, Malin, Jeppesen, Jørgen, Werlauff, Ulla, Rahbek, Jes, Sejersen, Thomas, Kreicbergs, Ulrika
Published in Journal of child neurology (01.03.2019)
Published in Journal of child neurology (01.03.2019)
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Bereaved Parents More Satisfied With the Care Given to Their Child With Severe Spinal Muscular Atrophy Than Nonbereaved
Hjorth, Elin, Kreicbergs, Ulrika, Sejersen, Thomas, Jeppesen, Jørgen, Werlauff, Ulla, Rahbek, Jes, Lövgren, Malin
Published in Journal of child neurology (01.02.2019)
Published in Journal of child neurology (01.02.2019)
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G.P.388 - Health related quality of life in European adults with DMD: Results from the Care-NMD-project
Steffensen, B., Otto, C., Werlauff, U., Rahbek, J., Hoejberg, A., Kirschner, J., Vry, J., Gramsch, K.
Published in Neuromuscular disorders : NMD (01.10.2015)
Published in Neuromuscular disorders : NMD (01.10.2015)
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