Document is current
Any future updates will be listed below
-
Authors
Walton, Holly https://orcid.org/0000-0002-8746-059X
Simpson, Amy
Ramsay, Angus I. G.
Hudson, Emma
Hunter, Amy
Jones, Jennifer
Ng, Pei Li
Leeson-Beevers, Kerry
Bloom, Lara
Kai, Joe
Kerecuk, Larissa
Kokocinska, Maria
Sutcliffe, Alastair G.
Morris, Stephen
Fulop, Naomi J.
-
Funding
Funding for this research was provided by:
Health Services and Delivery Research Programme (16/116/82)
- License Information
-
More Information
Article History
Received: 24 November 2021
Accepted: 9 April 2022
First Online: 20 April 2022
Declarations
:
: This study received ethical approval from the London-Surrey Borders Research Ethics Committee of the Health Research Authority (reference: 19/LO/0250). Participants provided informed consent to participate in this study and for anonymised quotes to be published.
: Not applicable as all individual quotes are fully anonymised. As part of the consent to participate, all participants gave consent to their anonymised quotes being used in research publications.
: HW, AIGR, EH, PLN, KLB, LB, JK, LK, MK, AGS, SM and NJF declare they have no competing interests. AS, AH and JJ 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.
