Funding for this research was provided by:
F. Hoffmann-La Roche
Received: 25 September 2020
Accepted: 22 March 2021
First Online: 31 March 2021
Change Date: 13 September 2021
Change Type: Correction
Change Details: A Correction to this paper has been published:
Change Details: https://doi.org/10.1186/S12883-021-02307-4
: Ethical approval and oversight of the qualitative interview study was provided by Copernicus Group Independent Review Board, a centralized IRB in the US (approval reference number IRB 20192527). The online survey was conducted following market research principles consistent with British Healthcare Business Intelligence Association guidelines for Adverse Event Reporting and General Data Protection Regulation guidelines, which are applicable to all countries. A link to the survey was sent to eligible participants and included an electronic informed consent form where participants completed a tick box indicating consent to participate prior to survey completion.Ethics approval for the quantitative online survey was not obtained in the UK since according to NHS Health Research Authority (HRA) guidelines and on completion of the HRA decision tool, it was determined that NHS Research Ethics Committee (REC) review was not required. In addition, the content of the survey included a reduced set of questions included in the qualitative interviews, which was approved by Copernicus Group Independent Review Board (approval reference number IRB 20192527).
: Consent to publish anonymized individual quotes was obtained from participants who took part in the qualitative interviews. Consent to publish aggregate results was obtained from participants completing the survey.
: HS and JB are employees and shareholders of Roche Products Ltd. JR and FP are employees of F. Hoffmann-La Roche Ltd. TD serves on advisory boards and receives consultancy fees for Roche, Biogen, Novartis and Cure SMA. CV is a PI for Roche clinical trials and has received consultancy fees from Roche, Biogen, and Avexis. AB, TD and CV received consultancy fees from Roche for this project. SR, JF, RA are employees of Adelphi Values, a health outcomes research agency commissioned by Roche to conduct the qualitative interview portion of the study and wrote the first draft of the manuscript. MDL has taken part in Advisory boards representing the patients’ views for Biogen, Novartis and Roche. JJ is an employee of CureSMA, which receives funding from Roche/Genentech for other distinct projects and has no competing personal interests. RC was an employee with CureSMA at the time of the study and has no conflicts to disclose. NG is a volunteer of SMA Europe and SMA Schweiz, mother of a child living with SMA, advisor and lecturer for Novartis Gene Therapies (AveXis) Biogen, Novartis, and Roche. LY, SR and ADM are employees of Charles River Associates commissioned by Roche to conduct the online survey. RB has no conflicts to disclose.