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Article History

Received: 1 February 2026

Accepted: 13 July 2026

First Online: 20 July 2026

Declarations

Consent for Publication: Not applicable.

Competing interests: For transparency, the authors disclose professional and academic involvement with rare disease initiatives discussed in this manuscript. F.A.B., B.M.O., D.A., and T.M.F. are affiliated with or have participated in activities of the Brazilian Rare Diseases Network (RARAS Network), which is one of the registry-related initiatives analysed in this study. T.M.F. coordinates the RARAS Network under grant 443030/2019-7 from the Brazilian Ministry of Health. D.A. coordinates the CNPq-funded CPLP-Raras project that supported this work, under grant number 403244/2024-2. N.M. is affiliated with the University of Brasília, an institution associated with the Raras Brasil Project/Observatory of Rare Diseases discussed in the manuscript, and serves as Coordinator-General for Rare Diseases at the Brazilian Ministry of Health. These roles are academic, public-interest, governmental, and/or institutional in nature. The authors declare that these affiliations, roles, and funding relationships did not influence the eligibility criteria, data extraction, classification of registry entities, interpretation of findings, or conclusions. The authors report no commercial financial conflicts of interest related to this study.

Ethics approval: Not applicable. This study analysed public-domain documents and publicly available sources.

Consent to participate: Not applicable.

Clinical trial number: Not applicable.

Acknowledgements / AI disclosure: The authors thank the Brazilian Rare Diseases Network (RARAS Network) for its support and collaboration. The authors used OpenAI ChatGPT and Grammarly for language refinement, editorial organisation, grammar and spelling review, and consistency checking during manuscript revision. No AI-assisted tool was used to generate original data, perform eligibility decisions, classify registry entities without author verification, validate references independently, or generate scientific conclusions. All scientific claims, extracted data, classifications, interpretations, citations, DOIs, URLs, and references were checked and approved by the authors. The authors take full responsibility for the content of the manuscript.