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European Journal of Neurology
|
February 22, 2023
Key priorities in rare neurological diseases: A statement from the Coordinating Panel on Rare Neurological Diseases of the European Academy of Neurology
Michelangelo Mancuso, Holm Graessner, Marianne de Visser, et al.
Orphanet Journal of Rare Diseases
|
March 3, 2022
Establishing and boosting communication in the European Reference Network for Rare Neurological Diseases (ERN-RND): the impact of offering free educational webinars
Alicia Brunelle Praschberger, Annemarie E M Post, Sanja Hermanns, et al.
BMC Medical Informatics and Decision Making
|
March 2, 2026
Sharing EHR data of patients with rare diseases for research - The role of quality assessments in a national federated research data infrastructure
Kais Tahar, Raphael Verbuecheln, Tamara Martin, et al.
Methods of Information in Medicine
|
January 3, 2023
Rare Diseases in Hospital Information Systems-An Interoperable Methodology for Distributed Data Quality Assessments
Kais Tahar, Tamara Martin, Yongli Mou, et al.
Orphanet Journal of Rare Diseases
|
January 31, 2026
KLINSE: a comprehensive service model for rare disease information and care management support
Katrin Jäger, Elke Dannenmann-Stern, Sevda Inbasi, et al.
Molecular Therapy. Nucleic Acids
|
July 29, 2025
Tailored antisense oligonucleotides for ultrarare CNS diseases: An experience-based best practice framework for individual patient evaluation
Rebecca Schüle, Holm Graessner, Annemieke Aartsma-Rus, et al.
Studies in Health Technology and Informatics
|
August 28, 2014
Vision and challenges of a cartographic representation of expert medical centres for rare diseases
Holger Storf, Tobias Hartz, Niels Tegtbauer, et al.
Orphanet Journal of Rare Diseases
|
March 19, 2021
Research priorities for rare neurological diseases: a representative view of patient representatives and healthcare professionals from the European Reference Network for Rare Neurological Diseases
Annemarie E M Post, Thomas Klockgether, G Bernhard Landwehrmeyer, et al.
Orphanet Journal of Rare Diseases
|
March 22, 2022
Development of a patient journey map for people living with cervical dystonia
Monika Benson, Alberto Albanese, Kailash P Bhatia, et al.
European Journal of Neurology
|
March 10, 2022
How to approach a neurogenetics diagnosis in different European countries: The European Academy of Neurology Neurogenetics Panel survey
Michelangelo Mancuso, Henry Houlden, Maria Judit Molnar, et al.
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Search research articles
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Showing results (11-20 of 85) with videos related to
Sort By:
Page
of 9
European Journal of Neurology
|
February 22, 2023
Key priorities in rare neurological diseases: A statement from the Coordinating Panel on Rare Neurological Diseases of the European Academy of Neurology
Michelangelo Mancuso, Holm Graessner, Marianne de Visser, et al.
Orphanet Journal of Rare Diseases
|
March 3, 2022
Establishing and boosting communication in the European Reference Network for Rare Neurological Diseases (ERN-RND): the impact of offering free educational webinars
Alicia Brunelle Praschberger, Annemarie E M Post, Sanja Hermanns, et al.
BMC Medical Informatics and Decision Making
|
March 2, 2026
Sharing EHR data of patients with rare diseases for research - The role of quality assessments in a national federated research data infrastructure
Kais Tahar, Raphael Verbuecheln, Tamara Martin, et al.
Methods of Information in Medicine
|
January 3, 2023
Rare Diseases in Hospital Information Systems-An Interoperable Methodology for Distributed Data Quality Assessments
Kais Tahar, Tamara Martin, Yongli Mou, et al.
Orphanet Journal of Rare Diseases
|
January 31, 2026
KLINSE: a comprehensive service model for rare disease information and care management support
Katrin Jäger, Elke Dannenmann-Stern, Sevda Inbasi, et al.
Molecular Therapy. Nucleic Acids
|
July 29, 2025
Tailored antisense oligonucleotides for ultrarare CNS diseases: An experience-based best practice framework for individual patient evaluation
Rebecca Schüle, Holm Graessner, Annemieke Aartsma-Rus, et al.
Studies in Health Technology and Informatics
|
August 28, 2014
Vision and challenges of a cartographic representation of expert medical centres for rare diseases
Holger Storf, Tobias Hartz, Niels Tegtbauer, et al.
Orphanet Journal of Rare Diseases
|
March 19, 2021
Research priorities for rare neurological diseases: a representative view of patient representatives and healthcare professionals from the European Reference Network for Rare Neurological Diseases
Annemarie E M Post, Thomas Klockgether, G Bernhard Landwehrmeyer, et al.
Orphanet Journal of Rare Diseases
|
March 22, 2022
Development of a patient journey map for people living with cervical dystonia
Monika Benson, Alberto Albanese, Kailash P Bhatia, et al.
European Journal of Neurology
|
March 10, 2022
How to approach a neurogenetics diagnosis in different European countries: The European Academy of Neurology Neurogenetics Panel survey
Michelangelo Mancuso, Henry Houlden, Maria Judit Molnar, et al.
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of 9