The urgent need to internationalize databases for rare disease patients
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The urgent need to internationalize databases for rare disease patients
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During this podcast (recorded during a webinar co-organized by Fondation Ipsen and Science Magazine), our guests (all experts in rare disease) discussed about
the need of patient registries.
There is no international database on rare disease genotypes, no
standardized nomenclature for phenotypes, and not even an agreed-upon
consent process to acquire, store, and maintain such data. This deficit
disadvantages patients and thwarts the development of new therapies.
A universal approach is needed to gather, store, and share phenotypic
and genotypic data for rare diseases. We require an accepted,
trustworthy system that protects patient identities while sharing
critical data needed to advance diagnosis and treatment. This free
webinar will interrogate global experts on how to drive this unmet and
urgent need forward.
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