Yesterday, Duchenne UK hosted a webinar about the DMD Hub.

Our co-founders, Emily and Alex, were joined by Emma Heslop, DMD Hub Manager, and Michela Guglieri, Honorary Consultant at the John Walton Centre Newcastle. The webinar provided an update on our plans, through the DMD Hub, to support gene therapy trials coming to the UK and how we are working with DMD Hub Hospital sites to plan for re-opening clinical research facilities, given the restrictions put in place due to COVID-19.

The COVID-19 pandemic has been challenging for the Duchenne community and the neuromuscular centres where patients attend for appointments and to take part in clinical trials.

The DMD Hub has continued to play a key coordination role between sites, sponsors and patients involved in clinical research.

In these very difficult and uncertain time for us all in the Duchenne community, we want to reassure you that we are doing everything we can to stay on top of the situation as it develops.  

We are conscious that this is a very difficult and uncertain time for us all in the Duchenne community, and we want to reassure you that we are doing everything we can to stay on top of the situation as it develops.  
 

Since 2018, the DMD Hub and Duchenne UK have invested £108,324 to fund two key roles at Leeds Teaching Hospital – a Neuromuscular Coordinator, Nadia Khan and a Neuromuscular Clinical Research Fellow, Cristina Martoz Lozano. We are pleased to share with you an update from DMD Hub site Leeds Teaching Hospital.

Duchenne UK is pleased to announce that TAMDMD, the Tamoxifen trial, led by Professor Dirk Fischer, has now been fully recruited for the main group of patients.

This means that in 12 months, these patients will have completed their 48 weeks of treatment and results of the trial can be expected in Spring 2021.

The Phase 1 Open Label Extension and Phase 2 Clinical Trial into Suvodirsen has been terminated on the basis of interim data.

We are very pleased to be able to share with you our first ever DMD Hub Impact Report. The report details all the incredible achievements and progress we have made to expand clinical trial capacity since 2014.