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Title: | Introducing a core dataset for real-world data in multiple sclerosis registries and cohorts: Recommendations from a global task force | Authors: | PARCIAK, Tina GEYS, Lotte Helme, Anne van der Mei, Ingrid Hillert, Jan Schmidt, Hollie Salter, Amber Zakaria, Magd Middleton, Rodden Stahmann, Alexander Dobay, Pamela Hernandez Martinez-Lapiscina, Elena Iaffaldano, Pietro Plueschke, Kelly Rojas, Juan, I Sabido, Meritxell Magyari, Melinda van der Walt, Anneke Arickx, Francis Comi, Giancarlo PEETERS, Liesbet |
Issue Date: | 2023 | Publisher: | SAGE PUBLICATIONS LTD | Source: | Multiple Sclerosis Journal, | Abstract: | Background: As of September 2022, there was no globally recommended set of core data elements for use in multiple sclerosis (MS) healthcare and research. As a result, data harmonisation across observational data sources and scientific collaboration is limited. Objectives: To define and agree upon a core dataset for real-world data (RWD) in MS from observational registries and cohorts. Methods: A three-phase process approach was conducted combining a landscaping exercise with dedicated discussions within a global multi-stakeholder task force consisting of 20 experts in the field of MS and its RWD to define the Core Dataset. Results: A core dataset for MS consisting of 44 variables in eight categories was translated into a data dictionary that has been published and disseminated for emerging and existing registries and cohorts to use. Categories include variables on demographics and comorbidities (patient-specific data), disease history, disease status, relapses, magnetic resonance imaging (MRI) and treatment data (disease-specific data). Conclusion: The MS Data Alliance Core Dataset guides emerging registries in their dataset definitions and speeds up and supports harmonisation across registries and initiatives. The straight-forward, time-efficient process using a dedicated global multi-stakeholder task force has proven to be effective to define a concise core dataset. | Notes: | Peeters, LM (corresponding author), Univ MS Ctr UMSC, Hasselt Pelt, Belgium. liesbet.peeters@uhasselt.be |
Keywords: | Core dataset; harmonisation; real-world data; multiple sclerosis;;registry; database | Document URI: | http://hdl.handle.net/1942/42295 | ISSN: | 1352-4585 | e-ISSN: | 1477-0970 | DOI: | 10.1177/13524585231216004 | ISI #: | WOS:001129077200001 | Rights: | The Author(s), 2023. | Category: | A1 | Type: | Journal Contribution |
Appears in Collections: | Research publications |
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Introducing a core dataset for real-world data in multiple sclerosis registries and cohorts.pdf | Early view | 808.31 kB | Adobe PDF | View/Open |
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