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Isabel Silva has received travel support from BioMarin; and has been an investigator in observational studies for BioMarin. Upon completion of the manuscript, Isabel Silva has changed affiliation to Unidade Local de Sa\u00fade de S\u00e3o Jos\u00e9, Lisbon, Portugal. Christoph Beger has received support for attending meetings and\/or travel from BioMarin. Cristina Gomes has received honoraria for lectures and\/or travel support from BioMarin; and has been research nurse in observational studies or clinical trials for Pfizer, Ascendis, BioMarin, and QED. Maria J. Pais has been research nurse in observational studies and\/or clinical trials for Pfizer, BioMarin, and QED. Alice Mirante has received honoraria for lectures, advisory boards, and\/or travel support from BioMarin; and has been an investigator in observational studies and\/or clinical trials for Pfizer, Ascendis, and BioMarin. S\u00e9rgio B. Sousa has received honoraria for lectures, advisory boards, and\/or travel support from BioMarin, Ascendis, and Kiowa Kirin; and has been an investigator in observational studies and\/or clinical trials for Pfizer, Ascendis, BioMarin, and QED.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of Interest"}},{"value":"The study was conducted in accordance with the Declaration of Helsinki, and approval from Unidade Local de Sa\u00fade de Coimbra ethics committee was obtained (ref. OBS.SF.140-2022; no. 490\/CE; 1 August, 2024). Written consent was obtained for the use of any identifying information.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical Approval"}}]}}