Document is current

Article History

Received: 7 April 2025

Accepted: 9 January 2026

First Online: 19 January 2026

Declarations

:

: Tuscany Region requests the delivery of an Informative Note to each patient (document available at: ) prior to their inclusion in the Rare Diseases Registry of Tuscany, according to Article 13 of Privacy Code (Legislative Decree 196/2003 Privacy Code). The Informative Note specifies that data of patients can be used for research and surveillance aims. Co-authors performing the study cannot in any way get the identity of patients and only aggregated results are published.

: Not applicable.

: The authors declare that they have no competing interests.