Toolbox Strategic Focus Area 1
Cataloguing and publishing descriptions of data sources
Because of the increasing awareness regarding the importance of using real-world data (RWD), the number of MS RWD collection efforts is growing. A considerable amount of RWD or biosamples are collected by registries or initiatives. The many existing and emerging MS RWD initiatives are distinct regarding inclusion criteria of people with MS, variables they collect, frequency of data collection, organizational aspects, and documentation processes, among others. Developing a detailed metadata catalogue of existing and emerging MS RWD initiatives is a meaningful step to improve awareness of existing and planned cohorts.
We implemented and maintain a metadata catalogue, which is currently hosted by the European Medical Information Framework (EMIF). It allows end-users with particular study requirements or research questions to browse metadata profiles of MS RWD cohorts. The current version of the MSDA Catalogue collects descriptive information on governance, purpose, inclusion criteria, procedures for data quality control, how and which data is 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.
At present, we are working on adding additional features to the Catalogue to improve end-user experience and to reduce data custodian workload, and the e-questionnaire will be adapted based on feedback.
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. Currently, 40 registries are part of the MSDA Catalogue, but registry recruitment is a continuous process. If you are interested in becoming part of the MSDA Catalogue or you would like to receive additional information, please contact Lotte Geys (firstname.lastname@example.org).