May 2017

As part of our community engagement work, we are putting together a series of surveys to better understand what patients and caregivers want from care, research and clinical trials. This will be the first survey in our series.

This survey has been designed by Alex Johnson from Duchenne UK and Sejal Thakrar from Smile with Shiv in consultation with our fellow Duchenne Charities, Action Duchenne, Alex’s Wish, Duchenne Now, DMD Pathfinders, The Duchenne Research Fund, Harrison’s Fund and Muscular Dystrophy UK, patients and caregivers from across the Duchenne community, Emma Heslop from the Duchenne Hub, Industry and healthcare professionals.

The survey has been developed in response to feedback from patients and caregivers regarding certain frustrations about the recruitment process for clinical trials and what patients and caregivers need to do to understand how to access research opportunities.

We want to understand why some patients take part in clinical trials and why others can’t, or decide not to; what makes taking part in a trial appealing? And what puts patients/caregivers off? We want to hear from those families and patients who are in trials, and from others who have tried to take part in trials and have been unable do so. We want to understand when you know about what you need to do, to get your child or yourself onto a clinical trial and what barriers you see as getting in the way.

The aim is to help those in the Duchenne community to better understand the current clinical trial recruitment process hopefully making it easier to access these opportunities and to align with our broader mission to ensure that all patients with DMD, including children and adults, have access to clinical trial opportunities. 

The survey will be open until the 21st of May and takes between 5 and 20 minutes to complete depending on your experiences.

To complete the survey visit  

https://www.surveymonkey.co.uk/r/ZPHLRNH