RARAS-T as a Neuroethical Informational Infrastructure for Orientative Teletriage in Rare Diseases in Brazil: A Sociotechnical Matrix for Qualifying Diagnostic and Care Journeys
Creators
- 1. Rare Diseases Institute of Piauí, Teresina, Piauí, Brazil
- 2. University Hospital of the Federal University of Piauí, Teresina, Brazil
- 3. Braz Cubas University Center, São Paulo, Brazil
- 4. School of Communications and Arts (ECA), University of São Paulo, São Paulo, Brazil
Description
Rare diseases represent a complex public health challenge due to diagnostic delay,
phenotypic heterogeneity, fragmented care pathways, scarce specialists, and sensitive genetic,
neurological, family, and functional data. This theoretical and propositional study presents RARAS-T
as a neuroethical informational infrastructure for orientative teletriage in rare diseases in Brazil.
Grounded in Information Science, neuroethics, digital health, Brazilian legislation, health literacy,
and patient journey mapping, the study proposes a sociotechnical matrix to organize early signs,
family narratives, clinical history, documents, care needs, and referral pathways. RARAS-T is not
conceived as an automated diagnostic tool, but as a responsible mediation layer.
Files
_raras_XII_TOI (2).pdf
Files
(168.2 kB)
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