1,720,973 research outputs found
Building Bridges from Data to Evidence: Harmonisation Strategies for Real-World Data from Multiple Sclerosis Registries and Cohorts
No full textImportance of real-world data (RWD) in multiple sclerosis (MS) research
RWD from registries and cohorts is invaluable for understanding MS, a chronic autoimmune disease affecting the central nervous system. It provides insights beyond what clinical trial data can offer, primarily through longitudinal patient observation and follow-up.
Challenges in transitioning from RWD to real-world evidence (RWE)
MS registries and cohorts aim to capture a comprehensive view of the disease, treatment efficacy and safety, or quality of life while adhering to local requirements and preferences. This variety of requirements and preferences often results in individually defined datasets with varying levels of detail and adherence to local rather than global standards. This data heterogeneity represents one of the main challenges in using MS RWD for RWE generation and collaboration.
Harmonisation strategies for MS RWD
We developed specific harmonisation strategies to address data heterogeneity, including adopting globally agreed-upon core datasets for MS. We highlighted the definition of a general MS core dataset of 44 variables as a step towards further harmonising MS RWD and facilitating collaboration within the MS community.
Expanding collaboration beyond the MS community
We investigated the suitability of standardisation initiatives for RWD in healthcare, specifically the Observational Health Data Sciences and Informatics (OHDSI), which utilises the Observational Medical Outcome Partnership (OMOP) common data model (CDM) for MS RWD from registries and cohorts. This exploration formed part of efforts to unlock collaboration opportunities for MS registry and cohort data with other RWD sources, like electronic health records.
Feasibility pilot and tool development
Within the European Health Data and Evidence Network (EHDEN) project, we conducted a pilot transformation of MS RWD sources to assess feasibility, highlighting challenges in the conversion process. These lessons learned supported the development of “SwitchBox,” a tool designed to automate the conversion of MS RWD in a specific format to the OMOP CDM, making the process more efficient and less resource-intensive
Building Bridges from Data to Evidence: Harmonisation Strategies for Real-World Data from Multiple Sclerosis Registries and Cohorts
No full textImportance of real-world data (RWD) in multiple sclerosis (MS) research
RWD from registries and cohorts is invaluable for understanding MS, a chronic autoimmune disease affecting the central nervous system. It provides insights beyond what clinical trial data can offer, primarily through longitudinal patient observation and follow-up.
Challenges in transitioning from RWD to real-world evidence (RWE)
MS registries and cohorts aim to capture a comprehensive view of the disease, treatment efficacy and safety, or quality of life while adhering to local requirements and preferences. This variety of requirements and preferences often results in individually defined datasets with varying levels of detail and adherence to local rather than global standards. This data heterogeneity represents one of the main challenges in using MS RWD for RWE generation and collaboration.
Harmonisation strategies for MS RWD
We developed specific harmonisation strategies to address data heterogeneity, including adopting globally agreed-upon core datasets for MS. We highlighted the definition of a general MS core dataset of 44 variables as a step towards further harmonising MS RWD and facilitating collaboration within the MS community.
Expanding collaboration beyond the MS community
We investigated the suitability of standardisation initiatives for RWD in healthcare, specifically the Observational Health Data Sciences and Informatics (OHDSI), which utilises the Observational Medical Outcome Partnership (OMOP) common data model (CDM) for MS RWD from registries and cohorts. This exploration formed part of efforts to unlock collaboration opportunities for MS registry and cohort data with other RWD sources, like electronic health records.
Feasibility pilot and tool development
Within the European Health Data and Evidence Network (EHDEN) project, we conducted a pilot transformation of MS RWD sources to assess feasibility, highlighting challenges in the conversion process. These lessons learned supported the development of “SwitchBox,” a tool designed to automate the conversion of MS RWD in a specific format to the OMOP CDM, making the process more efficient and less resource-intensive
Introducing a prototype tool to speed-up data cleaning and enhancement for improving the use of real-world MS
No full textIntroducing a prototype tool to speed-up data cleaning and enhancement for improving the use of real-world MS
No full textComparison of employment among people with Multiple Sclerosis across Europe
No full textBACKGROUND: People with Multiple Sclerosis (PwMS) suffer from an increased risk of unemployment during the course of the disease. In recent years progress has been made in increasing the time until patients have to leave the workforce permanently. Such a retirement is often associated with MS but the driving factors including disability progression, support measures at the workplace, and societal aspects are not yet fully understood. METHODS: We consolidated data from four European MS databases from Germany, Poland, Sweden, and the United Kingdom, which were able to provide data on working status, disability progression and quality of life in accordance with the data harmonization framework of the EUReMS (European Registry in Multiple Sclerosis) project. RESULTS: Factors strongly associated with unemployment are disability progression, low quality of life and being close to the statutory retirement age. Overall, highest employment rate (77%) and lowest effects of gender and disease duration were found in Sweden. CONCLUSIONS: We found remarkable differences between the European registers and the countries studied, which may indicate inequalities at European level. Furthermore, our findings suggest that it is feasible and useful to combine data from different MS registers in Europe, albeit the data structures are heterogeneous
The Journey of Data Within a Global Data Sharing Initiative: A Federated 3-Layer Data Analysis Pipeline to Scale Up Multiple Sclerosis Research
No full textBackground: 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.The author(s) have disclosed that they received financial support for the research, authorship, or publication of this paper from the following sources: the operational costs associated with this study were funded by the Multiple Sclerosis International Federation and the Multiple Sclerosis Data Alliance (MSDA) operating under the European Charcot Foundation. The MSDA is a global not-for-profit multistakeholder collaboration acting under the umbrella of the European Charcot Foundation, financially supported by a combination of industry partners, including Novartis, Merck, Biogen, Janssen, Bristol-Myers Squibb, and Roche. Additionally, this work was supported by the Flemish government through the Onderzoeksprogramma Artificiële Intelligentie Vlaanderen program and the Research Foundation Flanders for ELIXIR Belgium. QMENTA provided the central platform, while Amazon supplied the computational resources utilized in this work. The statistical analysis was conducted at the Clinical Outcomes Research Unit, The University of Melbourne, with support from National Health and Medical Research Council (1129189 and 1140766). The authors wish to extend their sincere appreciation to Nikola Lazovski for his invaluable guidance and collaboration throughout the global data sharing initiative project, especially concerning the central platform. They are also profoundly grateful to Dr Ilse Vermeulen for her unwavering support and encouragement throughout the various stages of drafting and conceptualizing the manuscript
Going Beyond Counting First Authors in Author Co-citation Analysis
Full text linkThe present study examines one of the fundamental aspects of author co-citation analysis (ACA) - the way co-citation
counts are defined. Co-citation counting provides the data on which all subsequent statistical analyses and mappings
are based, and we compare ACA results based on two different types of co-citation counting - the traditional type that
only counts the first one among a cited work's authors on the one hand and a non-traditional type that takes into
account the first 5 authors of a cited work on the other hand. Results indicate that the picture produced through this non-traditional author co-citation counting contains more coherent author groups and is therefore considerably clearer. However, this picture represents fewer specialties in the research field being studied than that produced through the traditional first-author co-citation counting when the same number of top-ranked authors is selected and analyzed. Reasons for these effects are discussed
The Multiple Sclerosis Data Alliance Catalogue
No full textAbstract 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
Variations on the Author
Full text link“Variations on the Author” discusses two of Eduardo Coutinho’s recent films (Um Dia na Vida, from 2010, and Últimas Conversas, posthumously released in 2015) and their contribution to the general question of documentary authorship. The director’s filmography is characterized by a consistent yet self-effacing form of authorial self-inscription: Coutinho often features as an interviewer that rather than express opinions propels discourses; an interviewer that is good at listening. This mode of self-inscription characterizes him as an author who is not expressive but who is nonetheless markedly present on the screen. In Um Dia na Vida, however, Coutinho is completely absent form the image, while Últimas Conversas, on the contrary, includes a confessional prologue that moves the director from the margins to the center of his films. This article examines the ways in which these works stand out in the filmography of a director who offers new insights into the notion of cinematic authorship
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