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Authors
Faye, Fatoumata
Crocione, Claudia http://orcid.org/0009-0002-2992-4808
Anido de Peña, Roberta
Bellagambi, Simona
Escati Peñaloza, Luciana
Hunter, Amy
Jensen, Lene
Oosterwijk, Cor http://orcid.org/0000-0002-0236-4436
Schoeters, Eva
de Vicente, Daniel
Faivre, Laurence
Wilbur, Michael
Le Cam, Yann
Dubief, Jessie http://orcid.org/0000-0001-8846-6240
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Article History
Received: 21 December 2023
Revised: 18 March 2024
Accepted: 21 March 2024
First Online: 16 May 2024
Competing interests
: The authors declare no competing interests.
: The Rare Barometer database is compliant with the General Data Protection Regulation. Participants to the Rare Barometer panel provided their email address, gave explicit consent to participate on a regular basis in online surveys and have the possibility to withdraw from the panel at any time. All respondents to the survey were informed that data from the survey will be considered through collective analysis and could stop answering the questionnaire at any time. Stored electronic survey records are pseudonymised and responses are only analysed as aggregated data, which are a consolidation of data relating to multiple respondents that cannot be traced back to a specific person. Data is stored on secured servers in France and is password protected. The survey was hosted and analysed on Le Sphinx survey software (lesphinx-developpement.fr: Sphinxonline version 4, and Sphinx IQ3 version 8). Advanced statistical analyses were performed using Stata (stata.com: version 18).
