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Authors
Walton, Holly https://orcid.org/0000-0002-8746-059X
Ng, Pei Li https://orcid.org/0000-0001-8411-220X
Simpson, Amy https://orcid.org/0000-0001-7880-4218
Bloom, Lara https://orcid.org/0000-0002-6168-8094
Chitty, Lyn S. https://orcid.org/0000-0002-4857-7138
Fulop, Naomi J. https://orcid.org/0000-0001-5306-6140
Hunter, Amy https://orcid.org/0000-0001-5076-8761
Jones, Jennifer https://orcid.org/0000-0001-6936-6092
Kai, Joe https://orcid.org/0000-0001-9040-9384
Kerecuk, Larissa https://orcid.org/0000-0001-5003-3183
Kokocinska, Maria https://orcid.org/0000-0001-7262-1314
Leeson-Beevers, Kerry https://orcid.org/0000-0001-8826-5086
Parkes, Sharon https://orcid.org/0000-0002-9817-1160
Ramsay, Angus I. G. https://orcid.org/0000-0002-4446-6916
Sutcliffe, Alastair https://orcid.org/0000-0001-8542-6155
Taylor, Christine https://orcid.org/0000-0003-0120-0365
Morris, Stephen https://orcid.org/0000-0002-5828-3563
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Funding
Funding for this research was provided by:
Health Services and Delivery Research Programme (16/116/82)
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Article History
Received: 28 June 2023
Accepted: 25 September 2023
First Online: 23 November 2023
Declarations
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: This study received ethical approval from UCL Research Ethics Committee (8423/002) and the London-Surrey Borders Research Ethics Committee of the Health Research Authority (19/LO/0250). Participants provided informed consent to participate in the survey reported in this manuscript.
: Not applicable.
: HW, PLN, LSC, NJF, JK, LK, MK, KLB, SP, AIGR, A Sutcliffe, CT, SM authors declare that they have no competing interests. A Simpson, JJ and AH are employees of Genetic Alliance UK. Genetic Alliance UK runs Rare Disease UK—a campaign for people with rare diseases and all who support them.
