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The EU RD Platform has just launched its new ERDRI tool, SPIDER (Secure Privacy-preserving Identity management in Distributed Environments for Research).
SPIDER enables the pseudonymisation of rare disease patients’ data in local, regional and national rare disease registries all across Europe.
Giving a pseudonym to a patient allows working with the patient’s data without revealing their identity at any point. In fact, this is the only safe way to exchange, share and transfer patient data for all types of studies (clinical, epidemiological, translational, pharmacological, etc.) and research, without revealing the patients’ identities.