The Multiple Sclerosis Data Alliance Catalogue-Reference-Cited by-同舟云学术

The Multiple Sclerosis Data Alliance Catalogue

Published:2021-11-01 Issue:6 Volume:23 Page:261-268
ISSN:1537-2073
Container-title:International Journal of MS Care
language:en
Short-container-title:

Author:

Geys Lotte¹²³^ORCID,Parciak Tina¹²³⁴,Pirmani Ashkan¹²⁵^ORCID,McBurney Robert⁶^ORCID,Schmidt Hollie⁶^ORCID,Malbaša Tanja⁷,Ziemssen Tjalf⁸^ORCID,Bergmann Arnfin⁹,Rojas Juan I.¹⁰,Cristiano Edgardo¹¹,García-Merino Juan Antonio¹²¹³,Fernández Óscar¹⁴,Kuhle Jens¹⁵,Gobbi Claudio¹⁶¹⁷,Delmas Amber¹⁸,Simpson-Yap Steve¹⁹,Nag Nupur¹⁹^ORCID,Yamout Bassem²⁰,Steinemann Nina²¹,Seeldrayers Pierrette²²,Dubois Bénédicte²³²⁴²⁵^ORCID,van der Mei Ingrid²⁶^ORCID,Stahmann Alexander²⁷,Drulovic Jelena²⁸,Pekmezovic Tatjana²⁹,Brola Waldemar³⁰^ORCID,Tintore Mar³¹^ORCID,Kalkers Nynke³²^ORCID,Ivanov Rumen³³,Zakaria Magd³⁴,Naseer Maged Abdel³⁵,Van Hecke Wim³⁶^ORCID,Grigoriadis Nikolaos³⁷^ORCID,Boziki Marina³⁷^ORCID,Carra Adriana³⁸^ORCID,Pawlak Mikolaj A.³⁹^ORCID,Dobson Ruth⁴⁰,Hellwig Kerstin⁴¹^ORCID,Gallagher Arlene⁴²,Leocani Letizia⁴³,Dalla Costa Gloria⁴⁴,de Carvalho Sousa Nise Alessandra⁴⁵,Van Wijmeersch Bart¹²⁴⁶,Peeters Liesbet M.¹²³^ORCID

Affiliation:

1. From the 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, E*HealthLine.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

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.

Publisher

Consortium of Multiple Sclerosis Centers

Subject

Advanced and Specialized Nursing,Neurology (clinical)

Link

https://meridian.allenpress.com/ijmsc/article-pdf/23/6/261/2997765/i1537-2073-23-6-261.pdf

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