The Multiple Sclerosis Data Alliance Catalogue Enabling Web-Based Discovery of Metadata from Real-World Multiple Sclerosis Data Sources

Lotte Geys; Tina Parciak; Ashkan Pirmani; Robert McBurney; Hollie Schmidt; Tanja Malbaša; Tjalf Ziemssen; Arnfin Bergmann; Juan I. Rojas; Edgardo Cristiano; Juan Antonio García-Merino; Óscar Fernández; Jens Kuhle; Claudio Gobbi; Amber Delmas; Steve Simpson-Yap; Nupur Nag; Bassem Yamout; Nina Steinemann; Pierrette Seeldrayers; B. nédicte Dubois; Ingrid van der Mei; Alexander Stahmann; Jelena Drulovic; Tatjana Pekmezovic; Waldemar Brola; Mar Tintore; Nynke Kalkers; Rumen Ivanov; Magd Zakaria; Maged Abdel Naseer; Wim Van Hecke; Nikolaos Grigoriadis; Marina Boziki; Adriana Carra; Mikolaj A. Pawlak; Ruth Dobson; Kerstin Hellwig; Arlene Gallagher; Letizia Leocani; Gloria Dalla Costa; Nise Alessandra de Carvalho Sousa; Bart Van Wijmeersch; Liesbet M. Peeters

doi:10.7224/1537-2073.2021-006

The Multiple Sclerosis Data Alliance Catalogue Enabling Web-Based Discovery of Metadata from Real-World Multiple Sclerosis Data Sources

Lotte Geys, Tina Parciak, Ashkan Pirmani, Robert McBurney, Hollie Schmidt, Tanja Malbaša, Tjalf Ziemssen, Arnfin Bergmann, Juan I. Rojas, Edgardo Cristiano, Juan Antonio García-Merino, Óscar Fernández, Jens Kuhle, Claudio Gobbi, Amber Delmas, Steve Simpson-Yap, Nupur Nag, Bassem Yamout, Nina Steinemann, Pierrette SeeldrayersB. nédicte Dubois, Ingrid van der Mei, Alexander Stahmann, Jelena Drulovic, Tatjana Pekmezovic, Waldemar Brola, Mar Tintore, Nynke Kalkers, Rumen Ivanov, Magd Zakaria, Maged Abdel Naseer, Wim Van Hecke, Nikolaos Grigoriadis, Marina Boziki, Adriana Carra, Mikolaj A. Pawlak, Ruth Dobson, Kerstin Hellwig, Arlene Gallagher, Letizia Leocani, Gloria Dalla Costa, Nise Alessandra de Carvalho Sousa, Bart Van Wijmeersch, Liesbet M. Peeters^*

^*Corresponding author for this work

Neurology

Research output: Contribution to journal › Article › Academic › peer-review

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. Int J MS Care. 2021;23:261-268.

Original language	English
Pages (from-to)	261-268
Journal	International journal of MS care
Volume	23
Issue number	6
DOIs	https://doi.org/10.7224/1537-2073.2021-006
Publication status	Published - 1 Nov 2021

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Geys, L., Parciak, T., Pirmani, A., McBurney, R., Schmidt, H., Malbaša, T., Ziemssen, T., Bergmann, A., Rojas, J. I., Cristiano, E., García-Merino, J. A., Fernández, Ó., Kuhle, J., Gobbi, C., Delmas, A., Simpson-Yap, S., Nag, N., Yamout, B., Steinemann, N., ... Peeters, L. M. (2021). The Multiple Sclerosis Data Alliance Catalogue Enabling Web-Based Discovery of Metadata from Real-World Multiple Sclerosis Data Sources. International journal of MS care, 23(6), 261-268. https://doi.org/10.7224/1537-2073.2021-006

@article{9d1cbeef71ab42f0a322fba82dddc9e1,

title = "The Multiple Sclerosis Data Alliance Catalogue Enabling Web-Based Discovery of Metadata from Real-World Multiple Sclerosis Data Sources",

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. Int J MS Care. 2021;23:261-268.",

author = "Lotte Geys and Tina Parciak and Ashkan Pirmani and Robert McBurney and Hollie Schmidt and Tanja Malba{\v s}a and Tjalf Ziemssen and Arnfin Bergmann and Rojas, {Juan I.} and Edgardo Cristiano and Garc{\'i}a-Merino, {Juan Antonio} and {\'O}scar Fern{\'a}ndez and Jens Kuhle and Claudio Gobbi and Amber Delmas and Steve Simpson-Yap and Nupur Nag and Bassem Yamout and Nina Steinemann and Pierrette Seeldrayers and Dubois, {B. n{\'e}dicte} and {van der Mei}, Ingrid and Alexander Stahmann and Jelena Drulovic and Tatjana Pekmezovic and Waldemar Brola and Mar Tintore and Nynke Kalkers and Rumen Ivanov and Magd Zakaria and Naseer, {Maged Abdel} and Hecke, {Wim Van} and Nikolaos Grigoriadis and Marina Boziki and Adriana Carra and Pawlak, {Mikolaj A.} and Ruth Dobson and Kerstin Hellwig and Arlene Gallagher and Letizia Leocani and Costa, {Gloria Dalla} and {de Carvalho Sousa}, {Nise Alessandra} and Wijmeersch, {Bart Van} and Peeters, {Liesbet M.}",

year = "2021",

month = nov,

day = "1",

doi = "10.7224/1537-2073.2021-006",

language = "English",

volume = "23",

pages = "261--268",

journal = "International journal of MS care",

issn = "1537-2073",

publisher = "Consortium of Multiple Sclerosis Centers (CMSC)",

number = "6",

}

Geys, L, Parciak, T, Pirmani, A, McBurney, R, Schmidt, H, Malbaša, T, Ziemssen, T, Bergmann, A, Rojas, JI, Cristiano, E, García-Merino, JA, Fernández, Ó, Kuhle, J, Gobbi, C, Delmas, A, Simpson-Yap, S, Nag, N, Yamout, B, Steinemann, N, Seeldrayers, P, Dubois, BN, van der Mei, I, Stahmann, A, Drulovic, J, Pekmezovic, T, Brola, W, Tintore, M, Kalkers, N, Ivanov, R, Zakaria, M, Naseer, MA, Hecke, WV, Grigoriadis, N, Boziki, M, Carra, A, Pawlak, MA, Dobson, R, Hellwig, K, Gallagher, A, Leocani, L, Costa, GD, de Carvalho Sousa, NA, Wijmeersch, BV & Peeters, LM 2021, 'The Multiple Sclerosis Data Alliance Catalogue Enabling Web-Based Discovery of Metadata from Real-World Multiple Sclerosis Data Sources', International journal of MS care, vol. 23, no. 6, pp. 261-268. https://doi.org/10.7224/1537-2073.2021-006

TY - JOUR

T1 - The Multiple Sclerosis Data Alliance Catalogue Enabling Web-Based Discovery of Metadata from Real-World Multiple Sclerosis Data Sources

AU - Geys, Lotte

AU - Parciak, Tina

AU - Pirmani, Ashkan

AU - McBurney, Robert

AU - Schmidt, Hollie

AU - Malbaša, Tanja

AU - Ziemssen, Tjalf

AU - Bergmann, Arnfin

AU - Rojas, Juan I.

AU - Cristiano, Edgardo

AU - García-Merino, Juan Antonio

AU - Fernández, Óscar

AU - Kuhle, Jens

AU - Gobbi, Claudio

AU - Delmas, Amber

AU - Simpson-Yap, Steve

AU - Nag, Nupur

AU - Yamout, Bassem

AU - Steinemann, Nina

AU - Seeldrayers, Pierrette

AU - Dubois, B. nédicte

AU - van der Mei, Ingrid

AU - Stahmann, Alexander

AU - Drulovic, Jelena

AU - Pekmezovic, Tatjana

AU - Brola, Waldemar

AU - Tintore, Mar

AU - Kalkers, Nynke

AU - Ivanov, Rumen

AU - Zakaria, Magd

AU - Naseer, Maged Abdel

AU - Hecke, Wim Van

AU - Grigoriadis, Nikolaos

AU - Boziki, Marina

AU - Carra, Adriana

AU - Pawlak, Mikolaj A.

AU - Dobson, Ruth

AU - Hellwig, Kerstin

AU - Gallagher, Arlene

AU - Leocani, Letizia

AU - Costa, Gloria Dalla

AU - de Carvalho Sousa, Nise Alessandra

AU - Wijmeersch, Bart Van

AU - Peeters, Liesbet M.

PY - 2021/11/1

Y1 - 2021/11/1

N2 - 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. Int J MS Care. 2021;23:261-268.

AB - 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. Int J MS Care. 2021;23:261-268.

UR - https://www.scopus.com/inward/record.uri?partnerID=HzOxMe3b&scp=85123623807&origin=inward

UR - https://www.ncbi.nlm.nih.gov/pubmed/35035297

U2 - 10.7224/1537-2073.2021-006

DO - 10.7224/1537-2073.2021-006

M3 - Article

C2 - 35035297

SN - 1537-2073

VL - 23

SP - 261

EP - 268

JO - International journal of MS care

JF - International journal of MS care

IS - 6

ER -

The Multiple Sclerosis Data Alliance Catalogue Enabling Web-Based Discovery of Metadata from Real-World Multiple Sclerosis Data Sources

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