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1دورية أكاديمية
المؤلفون: Antonio Atalaia, Dagmar Wandrei, Nawel Lalout, Rachel Thompson, Adrian Tassoni, Peter A. C. ’t Hoen, Dimitrios Athanasiou, Suzie-Ann Baker, Paraskevi Sakellariou, Georgios Paliouras, Carla D’Angelo, Rita Horvath, Michelangelo Mancuso, Nadine van der Beek, Cornelia Kornblum, Janbernd Kirschner, Davide Pareyson, Guillaume Bassez, Laura Blacas, Maxime Jacoupy, Catherine Eng, François Lamy, Jean-Philippe Plançon, Jana Haberlova, Esther Brusse, Janneke G. J. Hoeijmakers, Marianne de Visser, Kristl G. Claeys, Carmen Paradas, Antonio Toscano, Vincenzo Silani, Melinda Gyenge, Evy Reviers, Dalil Hamroun, Elisabeth Vroom, Mark D. Wilkinson, Hanns Lochmuller, Teresinha Evangelista
المصدر: Orphanet Journal of Rare Diseases, Vol 19, Iss 1, Pp 1-15 (2024)
مصطلحات موضوعية: Registry, Registry Hub, Neuromuscular Diseases, Rare Diseases, FAIR data, Medicine
وصف الملف: electronic resource
العلاقة: https://doaj.org/toc/1750-1172Test
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2دورية أكاديمية
المؤلفون: Astrid Pechmann, Max Behrens, Katharina Dörnbrack, Adrian Tassoni, Franziska Wenzel, Sabine Stein, Sibylle Vogt, Daniela Zöller, Günther Bernert, Tim Hagenacker, Ulrike Schara-Schmidt, Maggie C. Walter, Astrid Bertsche, Katharina Vill, Matthias Baumann, Manuela Baumgartner, Isabell Cordts, Astrid Eisenkölbl, Marina Flotats-Bastardas, Johannes Friese, René Günther, Andreas Hahn, Veronka Horber, Ralf A. Husain, Sabine Illsinger, Jörg Jahnel, Jessika Johannsen, Cornelia Köhler, Heike Kölbel, Monika Müller, Arpad von Moers, Annette Schwerin-Nagel, Christof Reihle, Kurt Schlachter, Gudrun Schreiber, Oliver Schwartz, Martin Smitka, Elisabeth Steiner, Regina Trollmann, Markus Weiler, Claudia Weiß, Gert Wiegand, Ekkehard Wilichowski, Andreas Ziegler, Hanns Lochmüller, Janbernd Kirschner, SMArtCARE study group
المصدر: Orphanet Journal of Rare Diseases, Vol 17, Iss 1, Pp 1-10 (2022)
مصطلحات موضوعية: Spinal muscular atrophy, Nusinersen, Sitter, Later-onset, SMArtCARE, Medicine
وصف الملف: electronic resource
العلاقة: https://doaj.org/toc/1750-1172Test
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3دورية أكاديمية
المؤلفون: Kirsten König, Astrid Pechmann, Simone Thiele, Maggie C. Walter, David Schorling, Adrian Tassoni, Hanns Lochmüller, Clemens Müller-Reible, Janbernd Kirschner
المصدر: Orphanet Journal of Rare Diseases, Vol 14, Iss 1, Pp 1-7 (2019)
مصطلحات موضوعية: Incidence, Neuromuscular disease, Spinal muscular atrophy, Duchenne muscular dystrophy, Medicine
وصف الملف: electronic resource
العلاقة: http://link.springer.com/article/10.1186/s13023-019-1125-2Test; https://doaj.org/toc/1750-1172Test
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4دورية أكاديمية
المؤلفون: Astrid Pechmann, Kirsten König, Günther Bernert, Kristina Schachtrup, Ulrike Schara, David Schorling, Inge Schwersenz, Sabine Stein, Adrian Tassoni, Sibylle Vogt, Maggie C. Walter, Hanns Lochmüller, Janbernd Kirschner
المصدر: Orphanet Journal of Rare Diseases, Vol 14, Iss 1, Pp 1-6 (2019)
مصطلحات موضوعية: Spinal muscular atrophy, Real-life outcome data, Orphan drug, Rare disease, Registry, Medicine
وصف الملف: electronic resource
العلاقة: http://link.springer.com/article/10.1186/s13023-019-0998-4Test; https://doaj.org/toc/1750-1172Test
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المؤلفون: Antonio Atalaia, Dagmar Wandrei, Nawel Lalout, Rachel Thompson, Adrian Tassoni, Peter A. C. ’t Hoen, Dimitrios Athanasiou, Suzie-Ann Baker, Paraskevi Sakellariou, Georgios Paliouras, Carla D’Angelo, Rita Horvath, Michelangelo Mancuso, Nadine van der Beek, Cornelia Kornblum, Janbernd Kirschner, Davide Pareyson, Guillaume Bassez, Laura Blacas, Maxime Jacoupy, Catherine Eng, François Lamy, Jean-Philippe Plançon, Jana Haberlova, Esther Brusse, Janneke G. J. Hoeijmakers, Marianne de Visser, Kristl G. Claeys, Carmen Paradas, Antonio Toscano, Vincenzo Silani, Melinda Gyenge, Evy Reviers, Dalil Hamroun, Elisabeth Vroom, Mark D. Wilkinson, Hanns Lochmuller, Teresinha Evangelista
مصطلحات موضوعية: Medicine, Cell Biology, Genetics, Molecular Biology, Immunology, Cancer, Science Policy, Computational Biology, Information Systems not elsewhere classified, Registry, Registry Hub, Neuromuscular Diseases, Rare Diseases, FAIR data
الإتاحة: https://doi.org/10.6084/m9.figshare.25223533.v1Test
https://figshare.com/articles/dataset/Additional_file_1_of_EURO-NMD_registry_federated_FAIR_infrastructure_innovative_technologies_and_concepts_of_a_patient-centred_registry_for_rare_neuromuscular_disorders/25223533Test -
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المؤلفون: David Schorling, Kirsten König, Janbernd Kirschner, Adrian Tassoni, Astrid Pechmann, Hanns Lochmüller, Simone Thiele, Maggie C. Walter
المصدر: Neuropediatrics.
مصطلحات موضوعية: Pediatrics, medicine.medical_specialty, business.industry, Incidence (epidemiology), medicine, business, Independent data
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_________::257dd159a65564cc6c9ffb5de165189bTest
https://doi.org/10.1055/s-0039-1698254Test -
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المؤلفون: Maria de los Angeles Beytía, Anna Lusakowska, Petr Vondráček, Birgit F. Steffensen, Sam Doerken, K. Gramsch, Agnes Herczegfalvi, Hanns Lochmüller, Kate Bushby, Veronika Karcagi, Anna Kostera-Pruszczyk, Marta Garami, Adrian Tassoni, Teodora Chamova, Lenka Mrázová, Lenka Pavlovska, Sunil Rodger, Velina Guergueltcheva, Rachel Thompson, J. Vry, Jes Rahbek, Janbernd Kirschner, Jana Strenková, Ivailo Tournev, Anna Kamińska
المصدر: Journal of Neuromuscular Diseases
مصطلحات موضوعية: Male, Research Report, 0301 basic medicine, Gerontology, standards of care, Cross-sectional study, Duchenne muscular dystrophy, Alternative medicine, Age dependent, functional status, 0302 clinical medicine, Adrenal Cortex Hormones, Surveys and Questionnaires, Milestone (project management), Medicine, Registries, Practice Patterns, Physicians', Young adult, Child, Age Factors, Standard of Care, Middle Aged, Respiratory Function Tests, 3. Good health, Patient management, Europe, Neurology, Echocardiography, Child, Preschool, Practice Guidelines as Topic, Guideline Adherence, Psychosocial, Adult, musculoskeletal diseases, congenital, hereditary, and neonatal diseases and abnormalities, medicine.medical_specialty, Adolescent, Young Adult, 03 medical and health sciences, Humans, Physical Therapy Modalities, business.industry, Infant, medicine.disease, nervous system diseases, Muscular Dystrophy, Duchenne, Cross-Sectional Studies, 030104 developmental biology, Physical therapy, Neurology (clinical), business, corticosteroid treatment, 030217 neurology & neurosurgery
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::e96d0ce7fb96be91956cbc2e6104a65fTest
https://doi.org/10.3233/jnd-160185Test -
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المؤلفون: Robin Anger, Manuela Glattacker, Adrian Tassoni, Juergen M Giesler, Martin Boeker, Rainer Bredenkamp, Frank Reichenbach
المصدر: JMIR mHealth and uHealth
JMIR mHealth and uHealth, Vol 8, Iss 4, p e15514 (2020)مصطلحات موضوعية: medicine.medical_specialty, Coping (psychology), 020205 medical informatics, effectiveness, Health Informatics, Health literacy, Information technology, 02 engineering and technology, rhinitis, allergic, seasonal, 03 medical and health sciences, 0302 clinical medicine, Germany, Health care, mental disorders, 0202 electrical engineering, electronic engineering, information engineering, medicine, Humans, longitudinal studies, 030212 general & internal medicine, Prospective cohort study, Adverse effect, Original Paper, business.industry, Usability, T58.5-58.64, Mobile Applications, Rhinitis, Allergic, prospective studies, 3. Good health, Clinical trial, usability, Cross-Sectional Studies, Mobile phone, patient reported outcome measures, Family medicine, Quality of Life, Pollen, Public aspects of medicine, RA1-1270, business, Cell Phone
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::30e9b6a2d44ac54ce9fd4f7931cd70cdTest
https://pubmed.ncbi.nlm.nih.gov/32301735Test -
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المؤلفون: Hanna, Hasselblatt, Johanna, Andrae, Adrian, Tassoni, Kai, Fitzer, Thomas, Bahls, Hans-Ulrich, Prokosch, Martin, Boeker
المصدر: Studies in health technology and informatics. 258
مصطلحات موضوعية: Clinical Trials as Topic, Health Information Interoperability, Patient Selection, Humans, Registries, Delivery of Health Care, Information Systems
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=pmid________::cb2c626fe375a57953f46f79a743be66Test
https://pubmed.ncbi.nlm.nih.gov/30942749Test -
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المؤلفون: Astrid, Pechmann, Kirsten, König, Günther, Bernert, Kristina, Schachtrup, Ulrike, Schara, David, Schorling, Inge, Schwersenz, Sabine, Stein, Adrian, Tassoni, Sibylle, Vogt, Maggie C, Walter, Hanns, Lochmüller, Janbernd, Kirschner
المصدر: Orphanet Journal of Rare Diseases, Vol 14, Iss 1, Pp 1-6 (2019)
Orphanet Journal of Rare Diseasesمصطلحات موضوعية: Registry, Orphan Drug Production, Orphan drug, Research, lcsh:R, Medizin, lcsh:Medicine, Spinal muscular atrophy, Muscular Atrophy, Spinal, Real-life outcome data, Rare Diseases, Austria, Germany, Quality of Life, Humans, Multicenter Studies as Topic, Prospective Studies, Registries, Rare disease, Switzerland
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=pmid_dedup__::3c396d53d7eae737a2f42ae0c7dccc47Test
https://www.scopus.com/inward/record.url?partnerID=HzOxMe3b&origin=inward&scp=85060249960Test