An innovative approach is being piloted at some sites in the VISION-DMD Phase 2b trial to inform the boys taking part about what to expect. A small team at Newcastle University is using previous experience with screen-based information and simple animation to develop an Information App which will tell trial participants and their families about the vamorolone phase 2b trial using images and spoken information.
All the information about the trial that is contained in the printed patient leaflet is also given through the Information App. The App will be provided to 9 sites in the first instance. Any benefits of using screen-based, animated, spoken information over a printed leaflet will be assessed via questionnaires for the families involved. If this media proves significantly beneficial, it may have implications for how we decide to best communicate with children participating in future trials.
Cathy Turner, involved in developing the App at Newcastle University said: “We hope to better engage boys on the trial with the information they receive. We think that the simple, colourful animation and the step-by-step approach will make it easier for younger children to understand what the trial is for and what they can expect. By having the App narrated by a young boy, we have removed the need for text and so even children who are not yet reading can access the information directly.”
Becky Crow, VISION-DMD Clinical Trial Manager explained: “We are excited to see what impact the App might have on the level of engagement and understanding of boys taking part in our trial. If it works well, it is something we may consider to even replace printed leaflets in the future.”
The starting point for the App introduces the character of Jamie who will tell the user all about the trial.
The App is divided into short sections to explain what will happen and when.
Jamie explains the procedures that will be part of the trial visits, including injections and physiotherapist assessments.
The VISION-DMD Information App is being built by Seven360 (formerly ShooFly), a design company in the North-East of the UK that specialises in digital media for education of young children.