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A clear and standardized way to share patient data responsibly

The International Organization for Standardization (ISO) has published Phenopackets, the first clear computational way to responsibly share individual patient traits, removing a major barrier to research on disease diagnosis, treatment, and mechanism discovery.

A “Phenopacket” is structured text that both humans and computers can read. It describes a person’s phenotype, a term for the way our genes manifest in our bodies, such as hair colour, hormone levels, or a bad reaction to a drug.

The standard was initially developed by the Global Alliance for Genomics and Health (GA4GH). The CSC is heavily involved in the GA4GH and was also involved in the development of Phenopackets. The GA4GH is a worldwide organisation which, in addition to sharing information and increasing understanding, systematically develops compatible open standards. The CSC takes the information from these developments forward in Finland and builds services that are inherently compatible with international services.

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