RDAF Multi-Stakeholer Workshop “Registries for Rare Diseases in Switzerland” – Report Published

    25 Jun, 2020

    The Rare Disease Action Forum (RDAF) published the report about its multi-stakeholder workshop “registries for rare diseases in Switzerland”. The report highlights the key discussion points which were shared by expert presentations from patients, physicians and industry representatives on their experiences with establishing, maintaining and developing patient registries. It also summarizes ideas and proposal which were put forward by participants during the subsequent discussions on this topic. Amongst others, it was highlighted that while registries are highly beneficial for improving care of patients with rare diseases, they require constant development and face challenges in their requirement for sustainable personal resources and financing, as well as balancing data access rights and protections. To maximize benefits of registries, further engagement and cooperation to address harmonization of registry management, multi-sponsoring and national/international networking is required.

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