Funding for this research was provided by:
Alexion Pharmaceuticals (ADONes)
Health and Care Research Wales (SRL Award 2021)
Received: 1 September 2021
Accepted: 24 March 2022
First Online: 7 April 2022
: Ethical approval that was granted by the London—Hampstead NHS Research Ethics Committee (reference 15/LO/1433).
: All the authors provide final approval of the version to be published, and agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.
: DAH is recipient of a Health and Care Research Wales Senior Research Leader award. DAH and AJ received funding from Alexion Pharmaceuticals Inc. (currently Alexion, Astra Zeneca Rare Disease). Neither organization had a role in study design, data collection, data analysis, data interpretation, or writing of the report. AJ has also received research funding from Biogen, GW pharmaceuticals, and speakers fees from Biogen, Chugai and MedImmune. SB, AJ, RB, SH, KM have no interests to declare.