Golli, Tanja
Juříková, Lenka
Sejersen, Thomas
Dixon, Craig
Funding for this research was provided by:
PTC Therapeutics
Article History
Received: 7 September 2023
Accepted: 13 February 2024
First Online: 21 February 2024
Declarations
:
: • This study did not involve any direct contact with patients, the only direct human contact in the study were the 12 clinicians that were interviewed for the exploration phase of the modified Delphi study. Interviews with healthcare professionals do not require ethics committee approval and no identifiable patients were discussed during the interviews. The 12 clinician interviews were conducted in line with all relevant codes of conduct including ABPI, Data Protection Act, Market Research Society, British Healthcare Business Intelligence Association (BHBIA). The 12 clinicians that were interviewed were provided with a contract outlining all the relevant permissions and code of conducts, a signed contract was in place with all 12 clinicians prior to the interview being conducted. There was no direct contact with the clinicians (<i>n</i> + 20) who completed the survey of the evaluation phase.
: The 12 clinicians that were interviewed were provided with a contract outlining all the relevant permissions and code of conducts, a signed contract was in place with all 12 clinicians prior to the interview being conducted. The data collected and to be published is anonymous.
: The Steering Group and experts interviewed as part of the exploration phase were paid an honorarium at fair market value for their time. The clinician respondents to the evaluation phase were also paid a modest honorarium for the time taken to complete the questionnaire. Tanja Golli: Recipient of honoraria for lectures from Novartis and PTC Therapeutics. Lenka Juříková: Recipient of honoraria received for lectures from PTC Therapeutics, Biogen and Sanofi Genzyme. Thomas Sejersen: Recipient of honoraria received for lectures or consultancy from Biogen, Novartis, PTC Therapeutics, Sarepta Therapeutics, Roche, Hansa Biopharma and Sanofi Genzyme. Craig Dixon: Funding from PTC Therapeutics to conduct the consensus project.