Ward, AJ
Lambert, DM http://orcid.org/0000-0003-0967-0476
Butterly, D
O’Byrne, JJ http://orcid.org/0000-0003-3162-2411
McGrath, V
Lynch, SA
Funding for this research was provided by:
University College Dublin
Article History
Received: 19 May 2023
Accepted: 15 August 2023
First Online: 26 August 2023
Declarations
: 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.
: This article does not contain any studies with animal subjects performed by any of the authors.
: Alana Ward, Deborah Lambert, Dearbhla Butterly, James O’Byrne, Vicky McGrath and Sallyann Lynch declare that they have no conflict of interest.
: The funding agency had no role or influence in the 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 the design, analysis, or reporting of this research.