LOINC Conference, Annecy, France

From first feature to rare disease co-management with LOINC

Liesbeth Siderius Foundation Rare Care Word & Foundation Shwachman Diamond Syndrome Support Holland

Marc de Graauw magrit.nl

We developed a data model using common coding standards such as LOINC, ICD, Orpha, HPO, and ICF to describe disease-specific profiles. These profiles can be used to import a "disease" definition to facilitate customized disease management with information systems, including patient apps. This greatly facilitates a custom approach for less common diseases, where custom-built apps are usually not cost-effective. This approach can enable large groups of patients with rare conditions, especially in less developed areas, to receive early and customized care and support.

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