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This group includes summary reports and slide decks from a series of 3 workshops from 2020 to 2023 in which the topic of MS registries was discussed with MS Societies in the Balkans region as part of the Membership Capacity Building (MCB) Programme.
The topic of MS registries was chosen by representatives of MS societies in a Discovery workshop that took place in 2019, which led to these workshops.
– The first workshop took place as part of the MCB 2020 Programme. This workshop was led by Professor Dipak Kalra and mapped out design and data considerations for MS registries. Two documents (1.0 and 1.1) summarize this workshop.
– The second workshop took place as part of MCB 2021 Programme. This workshop hosted two MS Societies (Italy and Norway) who already have established their MS registries. The workshop aimed to share lesson learned and best practices from the Italian and Norwegian MS Societies with Societies from the Balkans region, answering questions and inciting discussions. Two documents (2.0 and 2.1) summarize this workshop.
– The third workshop took place as part of MCB 2022 Programme. The workshop was led by Dr. Liesbet M. Peeters, the Chair of the MS Data Alliance (MSDA), mapping the roadmap and questions that Societies need to answer in developing a concept note to set MS registries. This workshop also linked representatives to a series of 5 webinars led by the MSDA team that would clarify their steps to setting up their registries. Two documents (3.0 and 3.1) summarize this workshop.