DiscoverLife and ScienceThe urgent need to internationalize databases for rare disease patients
The urgent need to internationalize databases for rare disease patients

The urgent need to internationalize databases for rare disease patients

Update: 2022-10-03
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Description

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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The urgent need to internationalize databases for rare disease patients

The urgent need to internationalize databases for rare disease patients

Life and Science