Funding for this research was provided by:
University of Manchester
Article History
Received: 6 November 2019
Accepted: 21 February 2020
First Online: 10 March 2020
Compliance with ethical standards
: This study was granted Ethical Approval by the North West Greater Manchester Central NHS Health Research Authority. Approval was granted on 16th January 2017 under the existing terms of the “PEGS: Patients Experiences of living with a genetic condition and utilising clinical Genetic Services” study (REC reference: 15/NW/0013. IRAS project ID: 134748).
: 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 (5).
: Informed consent was obtained from all individual participants included in the study.
: The authors declare that they have no conflict of interest.
: This article does not contain any studies with animals performed by any of the authors.