How are we increasing Patient Engagement in DMD Research?

There is a clear movement towards the use of patient engagement in research, especially in Europe and North America. The Canadian strategy for Patient-Oriented Research (POR) states “patients bring the perspective as ‘experts’ from their unique experience and knowledge gained through living with a condition or illness”. Engaging patients in research increases its quality and the quality of the care which comes out of this research.

A recent review reported less than 1% of published clinical trials contained data on patient engagement. The review also reported that recruitment and retention of patients is a major hurdle for patient engagement in research.

At Duchenne UK, we recognise the importance of patient engagement in research for Duchenne muscular dystrophy. Who really understands the burden of DMD better than patients and caregivers themselves? That is why we are dedicated to improving the recruitment of patients in research. The mission of the DMD Hub is to ensure every person diagnosed with Duchenne muscular dystrophy in the UK has the opportunity to take part in a clinical trial. The Clinical Trial Finder was designed to aid with recruitment to UK trials by informing the community when new trials are released.

We have also launched several of our own Patient and Caregiver Surveys, to understand better the views of patients and find out what is most important to them. These include a survey on Duchenne patient and caregiver views on accessing clinical trials as well as a survey on their views of muscle biopsies in research. 

For more information on the range of things Duchenne UK is doing to support patients and care-givers, as well as other aspects of our work such as support for research projects, please do take a look at our website or get in touch by email at [email protected] 

Published on 8 June 2018

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