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Authors
C, Arnott
AJ, Ward https://orcid.org/0009-0003-6486-0421
DM, Lambert https://orcid.org/0000-0003-0967-0476
D, Butterly
V, McGrath
SA, Lynch https://orcid.org/0000-0003-3540-1333
JJ, O.’Byrne https://orcid.org/0000-0003-3162-2411
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Funding
Funding for this research was provided by:
Irish Society of Human Genetics (2024 Summer Research Studentship)
Adelaide Health Foundation (R22808, R22808, R22808, R22808, R22808, R22808)
University College Dublin
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Article History
Received: 13 October 2024
Accepted: 20 March 2025
First Online: 2 April 2025
Declarations
: Ceri Arnott, Alana Ward, Deborah Lambert, Dearbhla Butterly, Vicky McGrath, Sally Ann Lynch and James O’Byrne declare that they have no conflict of interest.The funding agency had no role or influence in design, analysis or reporting of this research.Financial support for Rare Diseases Ireland’s advocacy work is provided by several industry partners who have an interest in rare conditions but who have no role or influence in design, analysis or reporting of this research.
: All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study.Approval for this survey was obtained from the MMUH Research Ethics committee (IRB Reference No: 1/378/2275).This article does not contain any studies with animal subjects performed by the any of the authors.
: The authors declare no competing interests.
