المؤلفون: Sven Dittrich, Erika Graf, Regina Trollmann, Ulrich Neudorf, Ulrike Schara, Antje Heilmann, Maja von der Hagen, Brigitte Stiller, Janbernd Kirschner, Robert Dalla Pozza, Wolfgang Müller-Felber, Katja Weiss, Katja von Au, Markus Khalil, Reinald Motz, Christoph Korenke, Martina Lange, Ekkehard Wilichowski, Joseph Pattathu, Friedrich Ebinger, Nicola Wiechmann, Rolf Schröder, on behalf of the German Competence Network for Congenital Heart Defects and the Treat-NMD Neuromuscular Network Investigators list of additional local Investigators and co-workers of the German Competence Network for Congenital Heart Defects and the Treat-NMD Neuromuscular Network

المصدر: Orphanet Journal of Rare Diseases, Vol 14, Iss 1, Pp 1-13 (2019)

مصطلحات موضوعية: Duchenne muscular dystrophy, Cardiomyopathy, ACE-inhibitors, ß-blockers, Medicine

وصف الملف: electronic resource

العلاقة: http://link.springer.com/article/10.1186/s13023-019-1066-9Test; https://doaj.org/toc/1750-1172Test

الوصول الحر: https://doaj.org/article/2c488c5520894228869bcc736e4817ceTest

المؤلفون: Rebecca A. Crow, Kimberly A. Hart, Michael P. McDermott, Rabi Tawil, William B. Martens, Barbara E. Herr, Elaine McColl, Jennifer Wilkinson, Janbernd Kirschner, Wendy M. King, Michele Eagle, Mary W. Brown, Deborah Hirtz, Hanns Lochmuller, Volker Straub, Emma Ciafaloni, Perry B. Shieh, Stefan Spinty, Anne-Marie Childs, Adnan Y. Manzur, Lucia Morandi, Russell J. Butterfield, Iain Horrocks, Helen Roper, Kevin M. Flanigan, Nancy L. Kuntz, Jean K. Mah, Leslie Morrison, Basil T. Darras, Maja von der Hagen, Ulrike Schara, Ekkehard Wilichowski, Tiziana Mongini, Craig M. McDonald, Giuseppe Vita, Richard J. Barohn, Richard S. Finkel, Matthew Wicklund, Hugh J. McMillan, Imelda Hughes, Elena Pegoraro, W. Bryan Burnette, James F. Howard, Mathula Thangarajh, Craig Campbell, Robert C. Griggs, Kate Bushby, Michela Guglieri

المصدر: Trials, Vol 19, Iss 1, Pp 1-9 (2018)

مصطلحات موضوعية: Clinical trial, Academic-led clinical trial, Clinical trial regulations, Duchenne muscular dystrophy, Rare disease, Medicine (General), R5-920

وصف الملف: electronic resource

العلاقة: http://link.springer.com/article/10.1186/s13063-018-2645-0Test; https://doaj.org/toc/1745-6215Test

الوصول الحر: https://doaj.org/article/59fc2ba5f36543fab1efe37a189c7b3fTest

المؤلفون: Craig Campbell a, Elaine McColl, Michael P. McDermott, William B. Martens, Michela Guglieri, Robert C. Griggs, The Muscle Study Group, and TREAT-NMD (Volker Straub, Anne-Marie Childs, Emma Ciafaloni, Perry B Shieh, Stefan Spinty, Russell J Butterfield, Iain Horrocks, Helen Roper, Lorenzo Maggi, Giovanni Baranello, Kevin M Flanigan, Nancy L Kuntz, Adnan Y Manzur, Basil T Darras, Peter Kang, Jean K Mah, Tiziana Mongini, Federica Ricci, Leslie Morrison, Monika Krzesniak-Swinarska, Maja von der Hagen, Richard S Finkel, Ashutosh Kumar, Matthew Wicklund, Craig M McDonald, Erik K Henricson, Ulrike Schara-Schmidt, Ekkehard Wilichowski, Richard J Barohn, Jeffrey Statland, Janbernd Kirschner, Giuseppe Vita, Gian Luca Vita, James F Howard Jr, Imelda Hughes, Hugh J McMillan, Elena Pegoraro, Luca Bello, W Bryan Burnette, Mathula Thangarajh, Taeun Chang.

المساهمون: Craig Campbell a, Elaine McColl, Michael P. McDermott, William B. Martens, Michela Guglieri, Robert C. Griggs, The Muscle Study Group, and TREAT-NMD (Volker Straub, Anne-Marie Childs, Emma Ciafaloni, Perry B Shieh, Stefan Spinty, Russell J Butterfield, Iain Horrocks, Helen Roper, Lorenzo Maggi, Giovanni Baranello, Kevin M Flanigan, Nancy L Kuntz, Adnan Y Manzur, Basil T Darras, Peter Kang, Jean K Mah, Tiziana Mongini, Federica Ricci, Leslie Morrison, Monika Krzesniak-Swinarska, Maja von der Hagen, Richard S Finkel, Ashutosh Kumar, Matthew Wicklund, Craig M McDonald, Erik K Henricson, Ulrike Schara-Schmidt, Ekkehard Wilichowski, Richard J Barohn, Jeffrey Statland, Janbernd Kirschner, Giuseppe Vita, Gian Luca Vita, James F Howard Jr, Imelda Hughes, Hugh J McMillan, Elena Pegoraro, Luca Bello, W Bryan Burnette, Mathula Thangarajh, Taeun Chang.

مصطلحات موضوعية: Duchenne muscular dystrophy, Health related quality of life, Psychosocial

العلاقة: info:eu-repo/semantics/altIdentifier/pmid/34489153; firstpage:1; lastpage:8; numberofpages:8; journal:NEUROMUSCULAR DISORDERS; http://hdl.handle.net/2318/1806661Test

الإتاحة: https://doi.org/10.1016/j.nmd.2021.06.001Test
http://hdl.handle.net/2318/1806661Test

المؤلفون: Giuseppe Vita, Helen Roper, Tiziana Mongini, Leslie Morrison, Nancy L. Kuntz, Russell J. Butterfield, Perry B. Shieh, Hugh J. McMillan, Erik K Henricson, Adnan Y. Manzur, Elaine McColl, Federica Ricci, Ulrike Schara-Schmidt, Anne-Marie Childs, Mathula Thangarajh, Gian Luca Vita, Peter B. Kang, Imelda Hughes, Jean K. Mah, Iain Horrocks, Michela Guglieri, Richard S. Finkel, William B. Martens, James F. Howard, Luca Bello, Taeun Chang, Elena Pegoraro, Kevin M. Flanigan, W. Bryan Burnette, Matthew Wicklund, Maja von der Hagen, Craig M. McDonald, Richard J. Barohn, Giovanni Baranello, Robert C. Griggs, Jeffrey Statland, Michael P. McDermott, Stefan Spinty, Ekkehard Wilichowski, Lorenzo Maggi, Emma Ciafaloni, Ashutosh Kumar, Janbernd Kirschner, Volker Straub, Monika Krzesniak-Swinarska, Craig Campbell, Basil T. Darras

مصطلحات موضوعية: Male, Parents, 0301 basic medicine, Duchenne muscular dystrophy, Neuromuscular disease, Psychometrics, Intraclass correlation, Patient demographics, Medizin, Disease, 03 medical and health sciences, Health related quality of life, Psychosocial, 0302 clinical medicine, Disease severity, Surveys and Questionnaires, medicine, Humans, Child, Genetics (clinical), business.industry, medicine.disease, humanities, Muscular Dystrophy, Duchenne, Cross-Sectional Studies, 030104 developmental biology, Caregivers, Neurology, Child, Preschool, Pediatrics, Perinatology and Child Health, Quality of Life, Self Report, Neurology (clinical), business, 030217 neurology & neurosurgery, Clinical psychology

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::9c3d44db6d855766069f7c038ed22ebeTest
http://hdl.handle.net/11577/3411585Test

المؤلفون: Maja von der Hagen, S Nolte-Buchholtz, Maria Janisch

المصدر: Abstracts of the 44th Annual Meeting of the Society for Neuropediatrics.

مصطلحات موضوعية: Pediatrics, medicine.medical_specialty, business.industry, Duchenne muscular dystrophy, medicine, medicine.disease, University hospital, business, Pediatric palliative care

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_________::d448f7430f979175afc5df7104151c5aTest
https://doi.org/10.1055/s-0038-1675922Test

المؤلفون: Ulrike Schara, Deborah Hirtz, Mary W. Brown, James F. Howard, W. Bryan Burnette, Nancy L. Kuntz, Maja von der Hagen, Lucia Morandi, Tiziana Mongini, Janbernd Kirschner, Emma Ciafaloni, Basil T. Darras, Richard J. Barohn, Giuseppe Vita, Michela Guglieri, Robert C. Griggs, Hanns Lochmüller, Elaine McColl, Kimberly A. Hart, Adnan Y. Manzur, Anne Marie Childs, Kate Bushby, William B. Martens, Craig Campbell, Elena Pegoraro, Kevin M. Flanigan, Barbara E. Herr, Rabi Tawil, Imelda Hughes, Russell J. Butterfield, Jennifer Wilkinson, Matthew Wicklund, Richard S. Finkel, Iain Horrocks, Helen Roper, Rebecca A. Crow, Perry B. Shieh, Hugh J. McMillan, Wendy King, Michael P. McDermott, Stefan Spinty, Mathula Thangarajh, Leslie Morrison, Ekkehard Wilichowski, Volker Straub, Craig M. McDonald, Jean K. Mah, M. Eagle

المصدر: Paediatrics Publications
Trials, Vol 19, Iss 1, Pp 1-9 (2018)
Trials

مصطلحات موضوعية: Budgets, Duchenne muscular dystrophy, Research design, Time Factors, International Cooperation, Medizin, Medicine (miscellaneous), Review, Contracts, Indemnity, Clinical trial regulations, 03 medical and health sciences, Rare Diseases, 0302 clinical medicine, Procurement, Research Support as Topic, Interim, Humans, Multicenter Studies as Topic, Medicine, Pharmacology (medical), Operations management, Academic-led clinical trial, Clinical trial, Rare disease, Clinical Trials as Topic, Muscular Dystrophy, Duchenne, Patient Selection, Steroids, Treatment Outcome, Checklist, Research Design, Muscular Dystrophy, 030212 general & internal medicine, lcsh:R5-920, business.industry, Timeline, Duchenne, 3. Good health, lcsh:Medicine (General), business, 030217 neurology & neurosurgery, Diversity (business)

وصف الملف: application/pdf

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::47306a085861dced47d0a7112cefcd6fTest
https://doi.org/10.1186/s13063-018-2645-0Test

المؤلفون: Adnan Y. Manzur, Wendy King, William B. Martens, Matthew Wicklund, Mary W. Brown, Elena Pegoraro, Tiziana Mongini, Maja von der Hagen, James F. Howard, Emma Ciafaloni, Barbara E. Herr, Tracey Willis, Kimberly A. Hart, Craig Campbell, Rabi Tawil, Imelda Hughes, Richard J. Barohn, Ulrike Schara, Helen Roper, Kevin M. Flanigan, Iain Horrocks, Elaine McColl, Nancy L. Kuntz, Leslie Morrison, Robert C. Griggs, Michael P. McDermott, Stefan Spinty, Russell J. Butterfield, Giovanni Baranello, Deborah Hirtz, Giuseppe Vita, W. Bryan Burnette, Mathula Thangarajh, Basil T. Darras, Ekkehard Wilichowski, Kate Bushby, Anne-Marie Childs, Richard S. Finkel, Craig M. McDonald, Perry B. Shieh, Hugh J. McMillan, Michela Guglieri, Volker Straub, Janbernd Kirschner, Jean K. Mah, M. Eagle, Jennifer Wilkinson

المصدر: Paediatrics Publications

مصطلحات موضوعية: 0301 basic medicine, Male, Pediatrics, Duchenne muscular dystrophy, Vital Capacity, Medizin, Disability Evaluation, 0302 clinical medicine, Prednisone, Pregnenediones, Pharmacology (medical), Muscular Dystrophy, Range of Motion, Articular, Child, Deflazacort, Medicine (all), General Medicine, 3. Good health, Prednisolone, Randomized, Standards of care, Patient Satisfaction, Research Design, Child, Preschool, Heart Function Tests, Corticosteroid, hormones, hormone substitutes, and hormone antagonists, Immunosuppressive Agents, medicine.drug, Range of Motion, medicine.medical_specialty, medicine.drug_class, Article, Drug Administration Schedule, 03 medical and health sciences, Double-Blind Method, medicine, Humans, Muscle Strength, Adverse effect, Preschool, business.industry, medicine.disease, Duchenne, Clinical trial, Muscular Dystrophy, Duchenne, Regimen, 030104 developmental biology, Physical therapy, business, 030217 neurology & neurosurgery, Articular

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::bf91581fa99ab62ae2588e79ef0ddf18Test
https://europepmc.org/articles/PMC6279424Test/

المؤلفون: Florian Stehling, Claudia Schmoor, Janbernd Kirschner, G. Bernert, Simone Thiele, Bernd Reitter, Jürg Lütschg, Rudolf Korinthenberg, Gabriele Ihorst, Gert Wiegand, Maja von der Hagen, Ekkehard Wilichowski, Ulrike Schara, Elke Hobbiebrunken, Georg M. Stettner, Ulrike Grieben, Simone Weiss, Joachim Schessl, Wolfgang Müller-Felber

المصدر: The Lancet. Neurology. 9(11)

مصطلحات موضوعية: Male, medicine.medical_specialty, Duchenne muscular dystrophy, Medizin, Placebo, law.invention, 03 medical and health sciences, 0302 clinical medicine, Randomized controlled trial, Double-Blind Method, law, Prednisone, Internal medicine, medicine, Humans, Muscular dystrophy, Child, 030304 developmental biology, 0303 health sciences, business.industry, Muscle weakness, medicine.disease, Ciclosporin, 3. Good health, Surgery, Clinical trial, Muscular Dystrophy, Duchenne, Review Literature as Topic, Treatment Outcome, Cyclosporine, Neurology (clinical), medicine.symptom, business, 030217 neurology & neurosurgery, medicine.drug

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::657a9863efa0614c6516326217a050a6Test
https://pubmed.ncbi.nlm.nih.gov/21087735Test