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The Multiple Sclerosis Data Alliance (MSDA) is a multistakeholder collaboration working to accelerate research insights for innovative care for people with MS. We envision a patient-centered learning health system in which all stakeholders contribute and use big MS data to co-create the innovations needed to advance the timely treatment and care of people with MS. The Multiple Sclerosis Data Alliance (MSDA) is a global multi-stakeholder collaboration working to accelerate research insights for innovative care and treatments for people with MS, by:- raising awareness about the importance of research using real world MS data- enabling better discovery and access to real world MS data- promoting trustworthy and transparent practices in the way real world MS data is used.The EMIF Catalogue provides a list of all the data sources registered by EMIF, through a portal and search tools, to enable potential data users to discover data sources that are most relevant to their research needs, according to a variety of data source and dataset descriptors. Through the Catalogue, EMIF provides registered users with descriptive information about the data sources that are offering access to their research data via the EMIF Platform, including lists of publications showing how the data from that data source has already contributed to research. Potential research users of EMIF may discover, through the EMIF Catalogue, what data are accessible for sharing and any constraints on their use, how requests are to be made and how data sharing requests will be assessed.BMD software is responsible for development and maintain the MSDA Catalogue, from technology and IT perspective, mainly develop the common data structure, user management and customized components/plugins. Code of practice for data sources contributing to the Catalogue. Data sources shall provide accurate descriptive information about (i) their organization, and (ii) its data subjects and data holdings (in a fully anonymized way), using the standard descriptors and file formats specified by EMIF. Data sources shall declare and maintain, through the Catalogue, information about what their original source health data is:- in the public domain without restriction;- available to bona fide researchers for shared use within the terms of any applicable participant consent and ethical approval, and is not restricted by Intellectual Property Rights;- described within the Catalogue, but is not available for analysis level access because of Intellectual Property Rights (IPR) or the limited scope of historically-obtained participants’ consent, and so cannot be shared with external researchers. Progress with any current wave(s) of collection, and the expected availability of that data, should be updated regularly, at least annually. A list of variables or categories of variables that are browsable and searchable should be provided via the EMIF Catalogue, and regularly updated or confirmed, at least annually. This variable list should ideally include metadata (value lists, completion rates, data quality indicators etc.). Data sources shall ensure that an up-to-date, informative description of the study or studies that have contributed research data to the data source is readily discoverable via the EMIF Catalogue, and is maintained. Data sources shall ensure that the contact details they provide will be updated when needed. Data sources represent and warrant to MSDA community that (i) the information they provide for inclusion in the EMIF Catalogue is correct; (ii) that they have all the rights to contribute such information to the EMIF Catalogue; and (iii) that this information can be included in the EMIF Catalogue and made available to the users. Code of practice for users of the EMIF Catalogue and Dashboards. Any publicly accessible materials, such as publications or reports or web pages that contain information derived from the EMIF Catalogue must acknowledge EMIF, and the original data sources where applicable. Citation text is provided within the Catalogue application (https://emif-catalogue.eu/c/msda).EMIF users may not reproduce portions of the Catalogue in any external publication or web page or other form that serves to duplicate the purposes of the EMIF Catalogue. In accessing the EMIF Catalogue, users must at all times comply with all applicable laws and regulations, as well as ethical requirements.
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