ReviewFrontiers in digital health2025
Rare diseases: ethical challenges in the era of digital health.
Review in Frontiers in digital health, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
2 citing papers in PubMed.
- Clinical telemonitoring and telerehabilitation of cognition in rare neurological diseases: a scoping review.Journal of neurology · 2026Article
- Integrating rare diseases into Africa's digital health strategies.PLOS digital health · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
To improve the health and wellbeing outcomes of people with rare conditions, it is necessary to integrate all aspects of health and wellbeing. Digital health technologies can appropriately capture and share harmonised data between care providers and the individuals concerned. The quality of digital health is dependent on defined data points reflecting the actual medical and societal situation and register changes when new diagnostics or therapies become available. The life experiences of individuals living with a condition, individually or as a group, are underrepresented in the digitalising world. This narrative review addresses rare conditions as an entity, public health strategies, digital health opportunities, and ethical considerations. The challenge is illustrated by comparing data gathered by manually selected data points with advanced artificial intelligence systems. In this new digital era, we consider the philosopher Kant's notion of noumena: "Only individuals with rare disabling conditions can genuinely convey the reality of living with those conditions". In conclusion, there is a pressing demand to embed the needs and experiences of people in all new technologies.
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Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.