EURO-NMD Registry Codebook

ERN EURO-NMD; Atalaia, Antonio; Lochmüller, Hanns

doi:10.5281/zenodo.11931376

Published June 17, 2024 | Version v2

Software documentation Open

EURO-NMD Registry Codebook

1. Inserm Center of Research in Myology, Neuro-Myology Service G.H. Pitié-Salpêtrière, Sorbonne Université, Paris, France
2. Department of Neuropediatrics and Muscle Disorders, Faculty of Medicine, Medical Center – University of Freiburg, Freiburg, Germany
3. Children's Hospital of Eastern Ontario Research Institute, Ottawa, Canada

Contributors

Data managers:

Project leader:

Evangelista, Teresinha⁷

Researchers:

Work package leader:

Kirschner, Janbernd¹²

1. World Duchenne Organisation, Veenendaal, The Netherlands
2. Neuromuscular Diseases Reference Center, Pitié-Salpêtrière University Hospital, APHP Paris, Paris, France
3. Department of Neurology, University Hospitals Leuven, and Laboratory for Muscle Diseases and Neuropathies, Department of Neurosciences, KU Leuven, and Leuven Brain Institute (LBI), Louvain, Belgium
4. European Reference Network for Rare Neuromuscular Diseases EURO-NMD, Institute of Myology, University Hospital Pitie-Salpetriere-APHP, Paris, France
5. Department of Neurology, Amsterdam University Medical Center, Location Academic Medical Center, Amsterdam, The Netherlands
6. Association Française Contre Les Myopathies, AFM-Téléthon, Evry, France
7. Neuromuscular Pathology Functional Unit; Neuropathology Service, Institute of Myology, University Hospital Pitié-Salpêtrière-APHP, Paris, France
8. Neuromuscular Center, University Hospital Motol, Prague, Czech Republic
9. Department of Neurology, Maastricht University Medical Center+, and MHeNS, School for Mental Health and Neuroscience, Maastricht University, Maastricht, The Netherlands
10. Department of Clinical Neurosciences, University of Cambridge, Cambridge, UK
11. Association Institute of Myology, Hôpital Pitié-Salpêtrière, Paris, France
12. Department of Neuropediatrics and Muscle Disorders, Faculty of Medicine, Medical Center – University of Freiburg, Freiburg, Germany
13. Department of Neurology, Neuromuscular Diseases Section, University Hospital Bonn, Bonn, Germany
14. Medical BioSciences Department, Radboud University Medical Center, Nijmegen, Netherlands
15. Duchenne Parent Project, Veenendaal, The Netherlands
16. Department of Clinical and Experimental Medicine, Neurological Institute, University of Pisa, Pisa, Italy
17. Hospital Universitario Virgen del Rocío/IBiS, Avda Manuel Siurot S/N, 41013, Seville, Andalucía, Spain
18. Unit of Rare Neurological Diseases. Department of Clinical Neurosciences, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy
19. European Patient Organisation for Dysimmune and Inflammatory Neuropathies, Paris, France
20. Department of Neurology and Laboratory of Neuroscience, IRCCS Istituto Auxologico Italiano, Milan, Italy
21. Clinical Trials Unit, Medical Center – University of Freiburg, Faculty of Medicine, University of Freiburg, Freiburg, Germany
22. Children's Hospital of Eastern Ontario Research Institute, Ottawa, Canada
23. Department of Clinical and Experimental Medicine, AOU G. Martino Di Messina, University of Messina, Messina, Italy
24. Departamento de Biotecnología-Biología Vegetal, Escuela Técnica Superior de Ingeniería Agronómica, Alimentaria y de Biosistemas, Centro de Biotecnología y Genómica de Plantas UPM-INIA, Universidad Politécnica de Madrid (UPM), Instituto Nacional de Investigación y Tecnología Agraria y Alimentaria (INIA/CSIC), 28223, Madrid, ES, Spain

The EURO-NMD Registry Codebook describes the structure, data collection instruments ("forms"), data fields, datatypes and available answer options of the EURO-NMD Registry database. The EURO-NMD Registry collects data from all neuromuscular patients seen at ERN EURO-NMD's expert centres. More information about the EURO-NMD Registry can be found on the website of ERN EURO-NMD: https://ern-euro-nmd.eu/registry-hub-for-rare-neuromuscular-diseases/ (accessed 17.06.2024)

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