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Authors
Contieri, Marcella https://orcid.org/0000-0002-8503-8475
Gatta, Francesca
Colonnese, Maria
Pasanisi, Annamaria
Longo, Filomena
Ferrero, Giovanni Battista
Piga, Antonio Giulio
Lisi, Roberto
Roberti, Domenico
Baiano, Chiara
Santangelo, Gabriella
Perrotta, Angelo
Simeone, Gelsomina
Perrotta, Silverio
Tartaglione, Immacolata
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Funding
Funding for this research was provided by:
bluebird bio (Not available)
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Article History
Accepted: 17 February 2026
First Online: 27 March 2026
Declarations
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: The authors declare no conflict of interest. Francesca Gatta was a Bluebird Bio Europe employee at the time of data collection; she is currently an employee of Alexion, AstraZeneca Rare Disease, Switzerland. Immacolata Tartaglione had consulting fees from Bluebird Bio.
: The study was approved by the central ethics committee (n. 208/2020) and also by each participant sites’ ethics committee.
: Participants who met eligibility criteria and provided signed online informed consent were granted access to the online platform and participated in the study.
: Not applicable.
: Not applicable.
: This study was funded by Bluebird Bio Inc.
: FG designed the study; IT gave consultancy during the entire duration of the study. FG, MCon., MCol. and IT drafted the paper. All the authors contributed to recruiting patients and they all reviewed and approved the final version of the manuscript.
: All data are available upon request to the corresponding author.
