Funding for this research was provided by:
This study was funded by Medics4RareDiseases
Article History
Received: 14 March 2023
Accepted: 24 March 2024
First Online: 19 April 2024
Declarations
:
: To inform participants about the objectives of the questionnaire, the first page of the questionnaire described: the purpose of the questionnaire, who was eligible to take part, how to complete the questionnaire, how long it would take to complete and who to contact with support. The final page offered participants the opportunity to provide consent for sharing their contact information if they wished to receive further communication regarding the results of the study. Since the questionnaire obtained data from rare disease patient groups based on ‘an average patient experience’, it did not collect individual patient information and therefore did not require ethical approval. The Medical Research Council’s decision tool was used to confirm that this project was not considered to be research, as defined by the UK Policy Framework for Health and Social Care Research, and this study was therefore considered to be a service evaluation.
: Not applicable; this manuscript does not contain personal data.
: MA: Nothing to declare; SB: Employee of RareQol Ltd; LM: CEO of Medics4RareDiseases.