Observed arrival · 2026-09-22
SAMS-Pat Turns Rare-Disease Symptoms Into Structured Evidence
A German project describes a patient-facing web application for recording symptoms day by day and connecting them with treatments.
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- People with rare diseases and their caregivers
- Worth noticing
- It maps everyday symptom descriptions to HPO and supports Phenopacket-compatible data exchange.
Field notes
The project builds on SAMS, a clinical documentation system, and proposes a patient-facing layer for everyday symptom capture. Its stated data model combines plain-language symptom labels with Human Phenotype Ontology coding, while exports use the GA4GH Phenopacket format. The page also describes optional email use, user-controlled sharing, anonymized patient comparison, and visual links between symptom changes and therapies.
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○OpenPublic substance visible
✦PrettyNotable craft visible
●ProPolished or operationally mature
◎NicheUnusually specific use
◉HumanPersonal, local, civic, or handmade
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