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Authors
Mazzucato, Monica https://orcid.org/0000-0001-6523-5458
Fanton, Giulia
Vianello, Andrea
Minichiello, Cinzia
Visonà Dalla Pozza, Laura
Toto, Ema
Pastori, Laura
Ceolin, Chiara
De Rui, Marina
Coin, Alessandra
Perilongo, Giorgio
Sergi, Giuseppe
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Funding
Funding for this research was provided by:
Università degli Studi di Padova
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Article History
Received: 8 August 2025
Revised: 15 October 2025
Accepted: 5 November 2025
First Online: 23 February 2026
Declarations
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: The authors declare no competing interests.
: The Veneto region rare disease registry (VRRDR) is mandatory by law and is run by the Regional Health Authority to evaluate service provision and performance. The Italian legislation identifies regional and national health authorities as collectors of personal data for surveillance purposes without explicit individual consent. The ethical approval is not required, because this study is a descriptive analysis of anonymous aggregate data without any direct or indirect intervention on patients (Decreto del Presidente del Consiglio dei Ministri, 3/3/2017, Identificazione dei sistemi di sorveglianza e dei registri di mortalità, di tumori e di altre patologie, 17A03142, GU Serie Generale n.109 del 12-05-2017). Available at: (last accessed November 9, 2025).
: Written informed consent for participation was not required from the participants or the participants’ legal guardians/next of kin in accordance with the national legislation. The Veneto region rare disease registry (VRRDR) is mandatory by law and has a public health purpose. The study was conducted on data routinely collected by the health services and anonymized, preventing identification of the individual concerned. Data analysis was carried out on anonymized aggregated data.
