Duchenne UK: DMD Patient and Caregiver Survey Results

In the summer of 2017, Duchenne UK launched its first patient survey, to better understand patient views on accessing clinical trials and research. The survey was entitled, “A questionnaire to understand Duchenne patient and caregiver perspectives on Duchenne clinical trials”.

The survey is part of our community engagement work to better understand what patients and caregivers want from care, research and clinical trials.

The aim is to help the Duchenne community to better understand the current clinical trial recruitment process, and to see where we can make improvements to create a fair and equitable trial recruitment process. The survey also aligns with Duchenne UK’s broader mission and the DMD Hub to ensure that all patients with Duchene have access to clinical trial opportunities.

This survey was 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 results have been analysed and Sejal Thakrar has created a survey report.