Synthetic Data, Anonymization, and LGPD in Building Predictive Models for Rare Diseases

This study discusses the use of synthetic and anonymized data as a methodological strategy for the development and validation of predictive models in rare diseases. Based on Santilli (2025), synthetic data were generated from clinical and epidemiological parameters to simulate plausible scenarios without association to real individuals. The approach proved compatible with Brazil’s General Data Protection Law (LGPD) and bioethical principles, enabling algorithm training, clinical simulations, and validation of digital health platforms. The results demonstrate that synthetic data represent an ethical, scalable, and scientifically useful alternative for early-stage research in rare diseases, while highlighting the need for future validation with real-world data.

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Publication Details

Journal
Zenodo (CERN European Organization for Nuclear Research)
Published
2026-04-13
DOI
https://doi.org/10.5281/zenodo.19559850
Primary Topic
Genomics and Rare Diseases
Type
article
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article

Synthetic Data, Anonymization, and LGPD in Building Predictive Models for Rare Diseases

Paula Lopes Alvim Santilli
Zenodo (CERN European Organization for Nuclear Research)
Genomics and Rare Diseases
article

Synthetic Data, Anonymization, and LGPD in Building Predictive Models for Rare Diseases

Paula Lopes Alvim Santilli
article en

Abstract

This study discusses the use of synthetic and anonymized data as a methodological strategy for the development and validation of predictive models in rare diseases. Based on Santilli (2025), synthetic data were generated from clinical and epidemiological parameters to simulate plausible scenarios without association to real individuals. The approach proved compatible with Brazil’s General Data Protection Law (LGPD) and bioethical principles, enabling algorithm training, clinical simulations, and validation of digital health platforms. The results demonstrate that synthetic data represent an ethical, scalable, and scientifically useful alternative for early-stage research in rare diseases, while highlighting the need for future validation with real-world data.

Zenodo (CERN European Organization for Nuclear Research)
Intelligent Energy (United Kingdom) (GB), Intelligent Health (United Kingdom) (GB)
Good health and well-being
Openalex Percentile: Top 12%
Genomics and Rare Diseases
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