Lotte Geys1,2,3, Tina Parciak1,2,3,4, Ashkan Pirmani1,2,5, Robert McBurney6, Hollie Schmidt6, Tanja Malbaša7, Tjalf Ziemssen8, Arnfin Bergmann9, Juan I Rojas10, Edgardo Cristiano11, Juan Antonio García-Merino12,13, Óscar Fernández14, Jens Kuhle15, Claudio Gobbi16,17, Amber Delmas18, Steve Simpson-Yap19, Nupur Nag19, Bassem Yamout20, Nina Steinemann21, Pierrette Seeldrayers22, Bénédicte Dubois23,24,25, Ingrid van der Mei26, Alexander Stahmann27, Jelena Drulovic28, Tatjana Pekmezovic29, Waldemar Brola30, Mar Tintore31, Nynke Kalkers32, Rumen Ivanov33, Magd Zakaria34, Maged Abdel Naseer35, Wim Van Hecke36, Nikolaos Grigoriadis37, Marina Boziki37, Adriana Carra38, Mikolaj A Pawlak39, Ruth Dobson40, Kerstin Hellwig41, Arlene Gallagher42, Letizia Leocani43, Gloria Dalla Costa44, Nise Alessandra de Carvalho Sousa45, Bart Van Wijmeersch1,2,46, Liesbet M Peeters1,2,3. 1. University MS Center, Hasselt-Pelt, Belgium (LG, TParciak, AP, BVW, LMP). 2. Biomedical Research Institute (BIOMED) (LG, TParciak, AP, BVW, LMP), University of Hasselt, Diepenbeek, Belgium. 3. Data Science Institute (LG, TParciak, AP, LMP), University of Hasselt, Diepenbeek, Belgium. 4. University Medical Center Göttingen, Department of Medical Informatics, Germany (TParciak). 5. ESAT-STADIUS, KU Leuven, Leuven, Belgium (AP). 6. Accelerated Cure Project for MS, Waltham, MA, USA (RM, HS). 7. Association of Multiple Sclerosis Societies of Croatia, Zagreb (TM). 8. Center for Clinical Neuroscience, University Hospital Dresden, Germany (TZ). 9. NeuroTransData Study Group, Neuburg/Donau, Germany (AB). 10. Neurology Department, Hospital Universitario de CEMIC, Buenos Aires, Argentina (JIR). 11. MS Center of Buenos Aires (CEMBA), Argentina (EC). 12. Department of Neurology, Universidad Autonoma de Madrid, Spain (JAG-M). 13. Neurology Service, Puerta de Hierro Hospital, Majadahonda, Madrid, Spain (JAG-M). 14. University of Malaga, Department of Pharmacology, Spain (OF). 15. Neurologic Clinic and Policlinic, MS Center and Research Center for Clinical Neuroimmunology and Neuroscience Basel (RC2NB), University Hospital Basel, University of Basel, Basel, Switzerland (JK). 16. Multiple Sclerosis Center, Department of Neurology, Neurocenter of Southern Switzerland, Lugano, Switzerland (CG). 17. Faculty of Biomedical Sciences, Università della Svizzera Italiana, Lugano, Switzerland (CG). 18. Life Sciences Department, EHealthLine.com, Inc (AD). 19. Neuroepidemiology Unit, Melbourne School of Population and Global Health, The University of Melbourne, Australia (SS-Y, NN). 20. Multiple Sclerosis Center, American University of Beirut Medical Center, Lebanon (BY). 21. Data Center of the Swiss Multiple Sclerosis Registry, Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Switzerland (NS). 22. Department of Neurology, CHU de Charleroi, Charleroi, Belgium (PS). 23. Department of Neurosciences, Laboratory for Neuroimmunology, KU Leuven, Leuven, Belgium (BD). 24. Leuven Brain Institute KU Leuven, Leuven, Belgium (BD). 25. Department of Neurology, University Hospitals Leuven, Leuven, Belgium (BD). 26. Menzies Institute for Medical Research, University of Tasmania, Hobart TAS, Australia (IvdM). 27. German MS-Registry, MS Forschungs- und Projektentwicklungs-gGmbH, Hannover, Germany (AS). 28. Clinic of Neurology, Clinical Center of Serbia, Belgrade, Serbia (JD). 29. Institute of Epidemiology, Faculty of Medicine, University of Belgrade, Belgrade, Serbia (TPekmezovic). 30. Collegium Medicum, Jan Kochanowski University, Kielce, Poland (WB). 31. Centre d'Esclerosi Múltiple de Catalunya (Cemcat), Edifici Cemcat, Hospital Universitari Vall d'Hebron, Barcelona, Spain (MT). 32. Department of Neurology, OLVG, and Department of Neurology, Amsterdam UMC, Location VUMC, Amsterdam, the Netherlands (NK). 33. PMA - Pharma Marketing Advisors, Ltd, Sofia, Bulgaria (RI). 34. Department of Neurology, Ain Shams University, Egypt (MZ). 35. Department of Neurology, Cairo University, Egypt (MAN). 36. icometrix, Leuven, Belgium (WVH). 37. Second Neurological University Department, Multiple Sclerosis Center, Aristotle University of Thessaloniki, AHEPA General University Hospital, Thessaloniki Greece (NG, MB). 38. MS Center Hospital Britanico, Buenos Aires, Argentina (AC). 39. Department of Neurology and Cerebrovascular Disorders, Poznan University of Medical Sciences, Poznan, Poland (MAP). 40. Wolfson Institute of Preventive Medicine, Charterhouse Square, London, UK (RD). 41. Department of Neurology, Katholisches Klinikum, St Josef Hospital, Ruhr University Bochum, Bochum Germany (KH). 42. Clinical Practice Research Datalink (CPRD), Medicines and Healthcare Products Regulatory Agency (MHRA), London, UK (AG). 43. Clinical Neurology Unit, San Raffaele University, Milan, Italy (LL, GDC). 44. Hospital Universitário Getulio Vargas, Manaus/Amazonas, Brazil (NAdCS). 45. REDONE - Brazilian Registry of Multiple Sclerosis and Neuromyelitis Optica Spectrum Disorders, São Paulo, Brazil (NAdCS). 46. Noorderhart, Rehabilitation and MS Center, Pelt, Belgium (BVW).
Abstract
BACKGROUND: One of the major objectives of the Multiple Sclerosis Data Alliance (MSDA) is to enable better discovery of multiple sclerosis (MS) real-world data (RWD). METHODS: We implemented the MSDA Catalogue, which is available worldwide. The current version of the MSDA Catalogue collects descriptive information on governance, purpose, inclusion criteria, procedures for data quality control, and how and which data are collected, including the use of e-health technologies and data on collection of COVID-19 variables. The current cataloguing procedure is performed in several manual steps, securing an effective catalogue. RESULTS: Herein we summarize the status of the MSDA Catalogue as of January 6, 2021. To date, 38 data sources across five continents are included in the MSDA Catalogue. These data sources differ in purpose, maturity, and variables collected, but this landscaping effort shows that there is substantial alignment on some domains. The MSDA Catalogue shows that personal data and basic disease data are the most collected categories of variables, whereas data on fatigue measurements and cognition scales are the least collected in MS registries/cohorts. CONCLUSIONS: The Web-based MSDA Catalogue provides strategic overview and allows authorized end users to browse metadata profiles of data cohorts and data sources. There are many existing and arising RWD sources in MS. Detailed cataloguing of MS RWD is a first and useful step toward reducing the time needed to discover MS RWD sets and promoting collaboration.
BACKGROUND: One of the major objectives of the Multiple Sclerosis Data Alliance (MSDA) is to enable better discovery of multiple sclerosis (MS) real-world data (RWD). METHODS: We implemented the MSDA Catalogue, which is available worldwide. The current version of the MSDA Catalogue collects descriptive information on governance, purpose, inclusion criteria, procedures for data quality control, and how and which data are collected, including the use of e-health technologies and data on collection of COVID-19 variables. The current cataloguing procedure is performed in several manual steps, securing an effective catalogue. RESULTS: Herein we summarize the status of the MSDA Catalogue as of January 6, 2021. To date, 38 data sources across five continents are included in the MSDA Catalogue. These data sources differ in purpose, maturity, and variables collected, but this landscaping effort shows that there is substantial alignment on some domains. The MSDA Catalogue shows that personal data and basic disease data are the most collected categories of variables, whereas data on fatigue measurements and cognition scales are the least collected in MS registries/cohorts. CONCLUSIONS: The Web-based MSDA Catalogue provides strategic overview and allows authorized end users to browse metadata profiles of data cohorts and data sources. There are many existing and arising RWD sources in MS. Detailed cataloguing of MS RWD is a first and useful step toward reducing the time needed to discover MS RWD sets and promoting collaboration.
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