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Article ; Online: Patient level dataset to study the effect of COVID-19 in people with Multiple Sclerosis.

Khan, Hamza / Geys, Lotte / Baneke, Peer / Comi, Giancarlo / Peeters, Liesbet M

2024 Volume 11, Issue 1, Page(s) 149

Abstract: Multiple Sclerosis (MS) is an inflammatory autoimmune disease of the central nervous system, causing increased vulnerability to infections and disability among young adults. Ever since the outbreak of coronavirus disease 2019 (COVID-19), caused by severe ...

Abstract	Multiple Sclerosis (MS) is an inflammatory autoimmune disease of the central nervous system, causing increased vulnerability to infections and disability among young adults. Ever since the outbreak of coronavirus disease 2019 (COVID-19), caused by severe acute respiratory syndrome coronavirus 2 infections, there have been concerns among people with MS (PwMS) about the potential interactions between various disease-modifying therapies and COVID-19. The COVID-19 in MS Global Data Sharing Initiative (GDSI) was initiated in 2020 with the aim of addressing these concerns. This paper focuses on the anonymisation and publicly releasing of a GDSI sub-dataset, comprising data entered by PwMS and clinicians using a fast data entry tool. The dataset includes information on demographics, comorbidities and hospital stay and COVID-19 symptoms of PwMS. The dataset can be used to perform different statistical analyses to improve our understanding of COVID-19 in MS. Furthermore, this dataset can also be used within the context of educational activities to educate different stakeholders on the complex data science topics that were used within the GDSI.
MeSH term(s)	Humans ; Young Adult ; Central Nervous System ; COVID-19/complications ; Data Science ; Disease Outbreaks ; Multiple Sclerosis/complications ; Multiple Sclerosis/epidemiology
Language	English
Publishing date	2024-01-31
Publishing country	England
Document type	Dataset ; Journal Article
ZDB-ID	2775191-0
ISSN	2052-4463 ; 2052-4463
ISSN (online)	2052-4463
ISSN	2052-4463
DOI	10.1038/s41597-024-02978-x
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Fair data for next-generation management of multiple sclerosis.

Peeters, Liesbet M

Multiple sclerosis (Houndmills, Basingstoke, England)

2017 Volume 24, Issue 9, Page(s) 1151–1156

Abstract: Multiple sclerosis (MS) is a progressive demyelinating and degenerative disease of the central nervous system with symptoms depending on the disease type and the site of lesions and is featured by heterogeneity of clinical expressions and responses to ... ...

Abstract	Multiple sclerosis (MS) is a progressive demyelinating and degenerative disease of the central nervous system with symptoms depending on the disease type and the site of lesions and is featured by heterogeneity of clinical expressions and responses to treatment strategies. An individualized clinical follow-up and multidisciplinary treatment is required. Transforming the population-based management of today into an individualized, personalized and precision-level management is a major goal in research. Indeed, a complex and unique interplay between genetic background and environmental exposure in each case likely determines clinical heterogeneity. To reach insights at the individual level, extensive amount of data are required. Many databases have been developed over the last few decades, but access to them is limited, and data are acquired in different ways and differences in definitions and indexing and software platforms preclude direct integration. Most existing (inter)national registers and IT platforms are strictly observational or focus on disease epidemiology or access to new disease modifying drugs. Here, a method to revolutionize management of MS to a personalized, individualized and precision level is outlined. The key to achieve this next level is FAIR data.
MeSH term(s)	Data Mining/methods ; Data Mining/trends ; Datasets as Topic ; Humans ; Multiple Sclerosis/therapy ; Precision Medicine/methods ; Precision Medicine/trends ; Software
Language	English
Publishing date	2017-12-19
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	1290669-4
ISSN	1477-0970 ; 1352-4585
ISSN (online)	1477-0970
ISSN	1352-4585
DOI	10.1177/1352458517748475
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Article: The Journey of Data Within a Global Data Sharing Initiative: A Federated 3-Layer Data Analysis Pipeline to Scale Up Multiple Sclerosis Research.

Pirmani, Ashkan / De Brouwer, Edward / Geys, Lotte / Parciak, Tina / Moreau, Yves / Peeters, Liesbet M

JMIR medical informatics

2023 Volume 11, Page(s) e48030

Abstract: Background: Investigating low-prevalence diseases such as multiple sclerosis is challenging because of the rather small number of individuals affected by this disease and the scattering of real-world data across numerous data sources. These obstacles ... ...

Abstract	Background: Investigating low-prevalence diseases such as multiple sclerosis is challenging because of the rather small number of individuals affected by this disease and the scattering of real-world data across numerous data sources. These obstacles impair data integration, standardization, and analysis, which negatively impact the generation of significant meaningful clinical evidence. Objective: This study aims to present a comprehensive, research question-agnostic, multistakeholder-driven end-to-end data analysis pipeline that accommodates 3 prevalent data-sharing streams: individual data sharing, core data set sharing, and federated model sharing. Methods: A demand-driven methodology is employed for standardization, followed by 3 streams of data acquisition, a data quality enhancement process, a data integration procedure, and a concluding analysis stage to fulfill real-world data-sharing requirements. This pipeline's effectiveness was demonstrated through its successful implementation in the COVID-19 and multiple sclerosis global data sharing initiative. Results: The global data sharing initiative yielded multiple scientific publications and provided extensive worldwide guidance for the community with multiple sclerosis. The pipeline facilitated gathering pertinent data from various sources, accommodating distinct sharing streams and assimilating them into a unified data set for subsequent statistical analysis or secure data examination. This pipeline contributed to the assembly of the largest data set of people with multiple sclerosis infected with COVID-19. Conclusions: The proposed data analysis pipeline exemplifies the potential of global stakeholder collaboration and underlines the significance of evidence-based decision-making. It serves as a paradigm for how data sharing initiatives can propel advancements in health care, emphasizing its adaptability and capacity to address diverse research inquiries.
Language	English
Publishing date	2023-11-09
Publishing country	Canada
Document type	Journal Article
ZDB-ID	2798261-0
ISSN	2291-9694
ISSN	2291-9694
DOI	10.2196/48030
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Article ; Online: Safety and effectiveness of cladribine tablets for multiple sclerosis: Results from a single-center real-world cohort.

Aerts, Sofie / Khan, Hamza / Severijns, Deborah / Popescu, Veronica / Peeters, Liesbet M / Van Wijmeersch, Bart

Multiple sclerosis and related disorders

2023 Volume 75, Page(s) 104735

Abstract: Background: Cladribine tablets are a highly effective immune reconstitution therapy licensed for treating relapsing multiple sclerosis (RMS) in Europe since 2017. Currently, there is a high demand for real-world data from different clinical settings on ... ...

Abstract	Background: Cladribine tablets are a highly effective immune reconstitution therapy licensed for treating relapsing multiple sclerosis (RMS) in Europe since 2017. Currently, there is a high demand for real-world data from different clinical settings on the effectiveness and safety profile of cladribine in MS. Methods: Within this report, we retrospectively evaluated the outcomes of RMS patients who received cladribine between August 2018 and November 2021 at our Belgian institute. Patients with data for three effectiveness endpoints, more specifically, relapses, MRI observations, and confirmed disability worsening were incorporated into the analysis of 'no evidence of disease activity' (NEDA-3) re-baselined at 3 months. Safety endpoints included lymphopenia, liver transaminases, and adverse events (AEs) during follow-up. Descriptive statistics and time-to-event analysis were performed, including subgroup analysis by pre-treatment. Results: Of the 84 RMS patients included in this study (age 42 [33-50], 64.3% female, diagnosis duration 6 [2-11] years, baseline EDSS 2.5 [1.5-3.6]), 14 (16.7%) patients experienced relapses, while disability progression and brain MRI activity occurred in 8.5% (6/71) and 6.3% (5/79). This resulted in 72.6% (n = 69, standard error 6%) retaining NEDA-3 status at the mean follow-up time of 22.6 ± 11.5 months. During the first year after cladribine initiation, disease activity prevailed more in patients with ≥2 prior DMTs and those switching from fingolimod, although both trends were not statistically significant. In terms of safety, 67.9% reported at least one AE during follow-up, the most frequent being fatigue (64.9%) and skin-related problems (38.6%). Conclusion: Overall, our research results confirm cladribine's safety and effectiveness among RMS patients in real-world conditions. After the re-baseline, we observed high rates of NEDA-3-retention, and no new safety signals were noted.
MeSH term(s)	Adult ; Female ; Humans ; Male ; Cladribine/adverse effects ; Immunosuppressive Agents/adverse effects ; Multiple Sclerosis/drug therapy ; Multiple Sclerosis, Relapsing-Remitting/diagnostic imaging ; Multiple Sclerosis, Relapsing-Remitting/drug therapy ; Multiple Sclerosis, Relapsing-Remitting/chemically induced ; Recurrence ; Retrospective Studies ; Tablets ; Middle Aged
Chemical Substances	Cladribine (47M74X9YT5) ; Immunosuppressive Agents ; Tablets
Language	English
Publishing date	2023-04-25
Publishing country	Netherlands
Document type	Journal Article
ZDB-ID	2645330-7
ISSN	2211-0356 ; 2211-0348
ISSN (online)	2211-0356
ISSN	2211-0348
DOI	10.1016/j.msard.2023.104735
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Article ; Online: The Journey of Data Within a Global Data Sharing Initiative

Ashkan Pirmani / Edward De Brouwer / Lotte Geys / Tina Parciak / Yves Moreau / Liesbet M Peeters

JMIR Medical Informatics, Vol 11, p e

A Federated 3-Layer Data Analysis Pipeline to Scale Up Multiple Sclerosis Research

2023 Volume 48030

Abstract: BackgroundInvestigating low-prevalence diseases such as multiple sclerosis is challenging because of the rather small number of individuals affected by this disease and the scattering of real-world data across numerous data sources. These obstacles ... ...

Abstract	BackgroundInvestigating low-prevalence diseases such as multiple sclerosis is challenging because of the rather small number of individuals affected by this disease and the scattering of real-world data across numerous data sources. These obstacles impair data integration, standardization, and analysis, which negatively impact the generation of significant meaningful clinical evidence. ObjectiveThis study aims to present a comprehensive, research question–agnostic, multistakeholder-driven end-to-end data analysis pipeline that accommodates 3 prevalent data-sharing streams: individual data sharing, core data set sharing, and federated model sharing. MethodsA demand-driven methodology is employed for standardization, followed by 3 streams of data acquisition, a data quality enhancement process, a data integration procedure, and a concluding analysis stage to fulfill real-world data-sharing requirements. This pipeline’s effectiveness was demonstrated through its successful implementation in the COVID-19 and multiple sclerosis global data sharing initiative. ResultsThe global data sharing initiative yielded multiple scientific publications and provided extensive worldwide guidance for the community with multiple sclerosis. The pipeline facilitated gathering pertinent data from various sources, accommodating distinct sharing streams and assimilating them into a unified data set for subsequent statistical analysis or secure data examination. This pipeline contributed to the assembly of the largest data set of people with multiple sclerosis infected with COVID-19. ConclusionsThe proposed data analysis pipeline exemplifies the potential of global stakeholder collaboration and underlines the significance of evidence-based decision-making. It serves as a paradigm for how data sharing initiatives can propel advancements in health care, emphasizing its adaptability and capacity to address diverse research inquiries.
Keywords	Computer applications to medicine. Medical informatics ; R858-859.7
Subject code	306
Language	English
Publishing date	2023-11-01T00:00:00Z
Publisher	JMIR Publications
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Motor evoked potentials for multiple sclerosis, a multiyear follow-up dataset

Jan Yperman / Veronica Popescu / Bart Van Wijmeersch / Thijs Becker / Liesbet M. Peeters

Scientific Data, Vol 9, Iss 1, Pp 1-

2022 Volume 10

Abstract: Measurement(s) Abnormal upper-limb motor evoked potentials • Abnormal lower-limb motor evoked potentials • Kurtzke Expanded Disability Status Scale Clinical Classification Technology Type(s) Transcranial Magnetic Stimulation • performing a clinical ... ...

Abstract	Measurement(s) Abnormal upper-limb motor evoked potentials • Abnormal lower-limb motor evoked potentials • Kurtzke Expanded Disability Status Scale Clinical Classification Technology Type(s) Transcranial Magnetic Stimulation • performing a clinical assessment Factor Type(s) Date of birth • Sex • Measurement date Sample Characteristic - Organism Homo sapiens Sample Characteristic - Location Belgium
Keywords	Science ; Q
Language	English
Publishing date	2022-05-01T00:00:00Z
Publisher	Nature Portfolio
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Motor evoked potentials for multiple sclerosis, a multiyear follow-up dataset.

Yperman, Jan / Popescu, Veronica / Van Wijmeersch, Bart / Becker, Thijs / Peeters, Liesbet M

Scientific data

2022 Volume 9, Issue 1, Page(s) 207

Abstract: Multiple sclerosis (MS) is a chronic disease affecting millions of people worldwide. Through the demyelinating and axonal pathology of MS, the signal conduction in the central nervous system is affected. Evoked potential measurements allow clinicians to ... ...

Abstract	Multiple sclerosis (MS) is a chronic disease affecting millions of people worldwide. Through the demyelinating and axonal pathology of MS, the signal conduction in the central nervous system is affected. Evoked potential measurements allow clinicians to monitor this process and can be used for decision support. We share a dataset that contains motor evoked potential (MEP) measurements, in which the brain is stimulated and the resulting signal is measured in the hands and feet. This results in time series of 100 milliseconds long. Typically, both hands and feet are measured in one hospital visit. The dataset contains 5586 visits of 963 patients, performed in day-to-day clinical care over a period of 6 years. The dataset consists of approximately 100,000 MEP. Clinical metadata such as the expanded disability status scale, sex, and age is also available. This dataset can be used to explore the role of evoked potentials in MS research and patient care. It may also be used as a benchmark for time series analysis and predictive modelling.
MeSH term(s)	Evoked Potentials, Motor ; Follow-Up Studies ; Humans ; Multiple Sclerosis/physiopathology
Language	English
Publishing date	2022-05-16
Publishing country	England
Document type	Dataset ; Journal Article
ZDB-ID	2775191-0
ISSN	2052-4463 ; 2052-4463
ISSN (online)	2052-4463
ISSN	2052-4463
DOI	10.1038/s41597-022-01335-0
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Book ; Online: Measuring Approximate Functional Dependencies

Parciak, Marcel / Weytjens, Sebastiaan / Hens, Niel / Neven, Frank / Peeters, Liesbet M. / Vansummeren, Stijn

a Comparative Study

2023

Abstract: Approximate functional dependencies (AFDs) are functional dependencies (FDs) that "almost" hold in a relation. While various measures have been proposed to quantify the level to which an FD holds approximately, they are difficult to compare and it is ... ...

Abstract	Approximate functional dependencies (AFDs) are functional dependencies (FDs) that "almost" hold in a relation. While various measures have been proposed to quantify the level to which an FD holds approximately, they are difficult to compare and it is unclear which measure is preferable when one needs to discover FDs in real-world data, i.e., data that only approximately satisfies the FD. In response, this paper formally and qualitatively compares AFD measures. We obtain a formal comparison through a novel presentation of measures in terms of Shannon and logical entropy. Qualitatively, we perform a sensitivity analysis w.r.t. structural properties of input relations and quantitatively study the effectiveness of AFD measures for ranking AFDs on real world data. Based on this analysis, we give clear recommendations for the AFD measures to use in practice. Comment: 40th IEEE International Conference on Data Engineering (ICDE 2024)
Keywords	Computer Science - Databases
Publishing date	2023-12-11
Publishing country	us
Document type	Book ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Treg-Resistant Cytotoxic CD4

Hoeks, Cindy / Vanheusden, Marjan / Peeters, Liesbet M / Stinissen, Piet / Broux, Bieke / Hellings, Niels

International journal of molecular sciences

2021 Volume 22, Issue 11

Abstract: Cytotoxic ... ...

Abstract	Cytotoxic CD4
MeSH term(s)	Adult ; Autoimmune Diseases/immunology ; CTLA-4 Antigen/immunology ; Cell Proliferation ; Female ; Granzymes/immunology ; Humans ; Interleukin-10/immunology ; Male ; Middle Aged ; Programmed Cell Death 1 Receptor/immunology ; T-Lymphocytes, Regulatory/cytology ; T-Lymphocytes, Regulatory/immunology ; Th17 Cells/cytology ; Th17 Cells/immunology
Chemical Substances	CTLA-4 Antigen ; CTLA4 protein, human ; IL10 protein, human ; PDCD1 protein, human ; Programmed Cell Death 1 Receptor ; Interleukin-10 (130068-27-8) ; GZMB protein, human (EC 3.4.21.-) ; Granzymes (EC 3.4.21.-)
Language	English
Publishing date	2021-05-26
Publishing country	Switzerland
Document type	Journal Article
ZDB-ID	2019364-6
ISSN	1422-0067 ; 1422-0067 ; 1661-6596
ISSN (online)	1422-0067
ISSN	1422-0067 ; 1661-6596
DOI	10.3390/ijms22115660
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Article ; Online: Preferred Self-Administered Questionnaires to Assess Resilience, Optimism, Pain Acceptance, and Social Support in People with Pain: A Modified Delphi Study.

Schroeter, Andrea C / MacDonald, David A / Scholten-Peeters, Gwendolyne G M / Goubert, Liesbet / Kendall, Elizabeth / Coppieters, Michel W

Pain medicine (Malden, Mass.)

2022 Volume 23, Issue 11, Page(s) 1891–1901

Abstract: Objectives: The plethora of self-administered questionnaires to assess positive psychosocial factors complicates questionnaire selection. This study aimed to identify and reach consensus on the most suitable self-administered questionnaires to assess ... ...

Abstract	Objectives: The plethora of self-administered questionnaires to assess positive psychosocial factors complicates questionnaire selection. This study aimed to identify and reach consensus on the most suitable self-administered questionnaires to assess resilience, optimism, pain acceptance and social support in people with pain. Design: A three-round modified Delphi study. Participants: Forty international experts. Methods: In Round 1, the experts suggested questionnaires deemed appropriate to assess resilience, optimism, pain acceptance and/or social support. In Round 2, experts indicated whether they considered the suggested questionnaires to be suitable (Yes/No/Don't know) to assess these psychosocial factors, taking into consideration content, feasibility, personal experience and the measurement properties which we provided for each questionnaire. Questionnaires that were considered suitable by the majority of experts (≥60%) were retained for Round 3. In Round 3, the suitability of each questionnaire was rated on a 0-10 Likert scale. Consensus was reached if ≥75% of experts rated the questionnaire ≥7. Results: From the 67 questionnaires suggested in Round 1, one questionnaire could be recommended per domain. For resilience: Pain Resilience Scale; for optimism: Revised Version of the Life Orientation Test; for pain acceptance: 8-item and Revised Versions of the Chronic Pain Acceptance Questionnaire; for social support: Emotional Support Item Bank of the PROMIS tool. Consensus for these questionnaires was also reached in a sensitivity analysis which excluded the ratings of experts involved in the development, translation and/or validation of relevant questionnaires. Conclusion: We advocate the use of these recommended questionnaires so data can be compared and pooled more easily.
MeSH term(s)	Humans ; Delphi Technique ; Surveys and Questionnaires ; Pain Measurement ; Social Support ; Chronic Pain
Language	English
Publishing date	2022-05-05
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2015903-1
ISSN	1526-4637 ; 1526-2375
ISSN (online)	1526-4637
ISSN	1526-2375
DOI	10.1093/pm/pnac074
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