Toolbox Strategic Focus Area 1

Cataloguing and publishing descriptions of data sources

Creation of a meta-data catalogue of existing cohorts and registries would help improve use of existing RWD sources. The MSDA developed a tool that provides this strategic oversight and captures data in a multidimensional concept. We acknowledge that data quality is context dependent and the same data elements and data sources may be deemed high quality for a different use. The intended use determines which variables are relevant or have a high impact in a specific context.

To capture this multidimensional concept of data, we provide a web-based application that allows end-users to brows meta-data profiles of data cohorts and data sources. The catalogue provides registered users with descriptive information about the data sources that are offering access to their research data.

We aim to include as many registries and cohorts as possible. Besides custodians of National Registries, we approach researchers that have established unique cohorts to contribute to the Catalogue. The first version of the MSDA Catalogue presents an electronic version the questionnaire used in the most recent European Mapping Exercise. This is hosted by the European Medical Information Framework (EMIF) which is a moderated community incorporating many other disease specific communities (incl. Alzheimer Disease, rare diseases, …).

Registry recruitment started in June 2019 and is an ongoing effort. Currently, a list of 53 registry custodians is available. Many of them (>30) have already formulated their interest to participate in this meta-data collection effort. Currently, 14 registries are enrolled in the MSDA Catalogue. Registry recruitment will continue during 2020-2023. Next to this, every year, the meta-data of registries is updated. The e-questionnaire is evaluated and adapted based on feedback.

Recently, the US National Society and the Consortium of Multiple Sclerosis Centers (CMSC) started a cataloguing effort focusing on MS data initiatives in the Northern US region using the Maelstrom pipeline in which MSDA will collaborate. A cataloguing and harmonization pipeline will be set up jointly allowing optimal collaborative research. This pipeline will allow both interaction with the Maelstrom pipeline as well as with the MSDA cataloguing/harmonization efforts, while reducing the data custodian as much as possible. 

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