Evidence map›Paper›PMID 40171526›Full record

ArticleFrontiers in digital health2025

Synthetic data generation: a privacy-preserving approach to accelerate rare disease research.

Jorge M Mendes, Aziz Barbar, Marwa Refaie

Abstract read
In one paragraph

Article 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 16 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
16citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

16 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
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  4. Synthetic Medical Data vs. The Four Principles: Ethical Trade-Offs and Zombie Data.Health care analysis : HCA : journal of health philosophy and policy · 2026
    Article
  5. Ethical considerations in generative artificial intelligence for synthetic data generation in ophthalmology.Graefe's archive for clinical and experimental ophthalmology = Albrecht von Graefes Archiv fur klinische und experimentelle Ophthalmologie · 2026
    Review
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  13. AI and innovation in clinical trials.NPJ digital medicine · 2025
    Article
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

3 authors.

Jorge M MendesComprehensive Health Research Centre (CHRC), NOVA Medical School, Faculdade de Ciências Médicas, Universidade NOVA de Lisboa, Lisbon, Portugal.
Aziz BarbarFaculty of Engineering and Computer Science, American University of Science and Technology, Beirut, Lebanon.
Marwa RefaieSchool of Computing, Coventry University, The Knowledge Hub Universities, New Administrative Capital, Egypt.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Rare disease research faces significant challenges due to limited patient data, strict privacy regulations, and the need for diverse datasets to develop accurate AI-driven diagnostics and treatments. Synthetic data-artificially generated datasets that mimic patient data while preserving privacy-offer a promising solution to these issues. This article explores how synthetic data can bridge data gaps, enabling the training of AI models, simulating clinical trials, and facilitating cross-border collaborations in rare disease research. We examine case studies where synthetic data successfully replicated patient characteristics, and supported predictive modelling and ensured compliance with regulations like GDPR and HIPAA. While acknowledging current limitations, we discuss synthetic data's potential to revolutionise rare disease research by enhancing data availability and privacy file enabling more efficient and effective research efforts in diagnosing, treating, and managing rare diseases globally.

Indexed as

AI-driven diagnosticsethical frameworksEuropean Health Data Space (EHDS)medical imagingprivacy preservationrare disease researchregulatory compliancesynthetic data

Identifiers

PMID40171526
PMCPMC11958975

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

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.