Access to treatments

New neuromuscular consultant appointed to lead clinical trials as a result of DMD Hub funding

Dr Emily Whitehouse is the latest consultant to join the fight against DMD at the Royal Manchester Children’s Hospital, which is part of the DMD Hub.

The DMD Hub is Duchenne UK’s programme to expand capacity for Duchenne muscular dystrophy (DMD) clinical trials in the UK. The DMD Hub has funded 30 key posts at hospital sites in the UK to-date, from research nurses to clinical trial coordinators, allowing many more boys to take part in clinical trials for potentially life-changing treatments. 

We’re pleased to announce that Dr Emily Whitehouse, who was initially appointed as a clinical research fellow at the Royal Manchester Children’s Hospital (RMCH) through DMD Hub funding, has now been appointed as a neuromuscular consultant. 

The Royal Manchester Children’s Hospital (RMCH) has been part of the Hub network since May 2019. To date, RMCH has run 5 clinical trials. This includes FOR-DMD, which will help to determine the best steroid regime for DMD patients. 

The clinical research fellow post was funded by an innovative pump-priming model, with full funding in the first year and decreasing over subsequent years as the income from trials at the sites increases. In addition, the DMD Hub creates connections between hospital sites, government bodies and pharmaceutical companies. This ensures that the posts we fund are sustainable in the long term, as there are viable locations to run DMD trials in the UK. 

Dr Whitehouse was recruited to the clinical research fellow post at RMCH in November 2019. This is a position which provides support to the neuromuscular consultant, such as by running patients’ assessments to measure how well a trial drug is working. In addition to working with patients, Dr Whitehouse has delivered teaching to other doctors on how to recognise neuromuscular disorders. She has also worked with pharmaceutical companies looking to set up trials in the UK. As a neuromuscular consultant, she will now be able to lead on DMD clinical trials and all aspects of the care of patients with neuromuscular conditions.  

By funding key junior roles for clinical trials, the DMD Hub is playing a crucial role in developing the next generation of consultants. New appointments such as these demonstrate how our funding model is providing sites with long-term capacity to run clinical trials in the UK.   

Dr Imelda Hughes, Paedriatric Neurology Consultant at Manchester University NHS Trust, said: “We are delighted that Dr Whitehouse has been appointed to join our neuromuscular consultant team and extremely grateful to the DMD Hub for supporting the post of Neuromuscular clinical research fellow, which gave her invaluable experience in clinical trials and all aspects of management of patients with neuromuscular disease, cultivating her interest to continue in this speciality.”

The initial post was co-funded by Duchenne Now and our Family Fund Team Felix. Lisa Kuhwald from Team Felix said: “I’m so pleased that Team Felix was able to support this valuable post and many congratulations to Dr Whitehouse for your promotion. We look forward to continuing to work with the DMD Hub and the Manchester team and supporting future research.” Tony Levene from Duchenne Now said: “Good luck to Dr Whitehouse in her new role. We’re proud to support the DMD Hub and enable such important research to continue.” 

You can find out more about the Hub and clinical trials for DMD on the DMD Hub website.