Acaster Lloyd, an independent research consultancy, are carrying out research looking at the impact of Duchenne muscular dystrophy on family carers, including peoples experience with licenced treatments, like Translarna.
The study will involve an interview with a researcher which would take around 1 to 1.5 hours and can be conducted by telephone, over Skype or in person. Participants would also be asked to complete some brief questionnaires. All participants will receive a £50 Amazon voucher for taking part in an interview. Travel costs will also be reimbursed for those who take part in a face-to-face interview.
Muscular Dystrophy UK and Action Duchenne have been involved in reviewing this piece of research. From our involvement in the Managed Access Agreement for Translarna we know how important quality of life information can be. The results of this study will help accurately describe the impact of Duchenne on carers which will help inform NICE when they review treatments for Duchenne and decide whether these should be funded by the NHS.