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.