News and updates with the latest clinical trials, medical reports and interesting developments within the DMD community.
Today, we’re pleased to share an update from Mashal Asif who is the DMD Hub Clinical Trial Coordinators at Bristol Royal Hospital for Children
Bristol officially joined the DMD Hub in 2018, with £41,151 in funding for a Clinical Trial Coordinator post. The funding for this post is kindly supported by the Mulberry Trust.
Today, we’re speaking to Tracy Langan, from the Royal Hospital for Children Glasgow about her experiences as a DMD Hub Trial Coordinator.
Glasgow joined the DMD Hub in 2020, with £183,760 to fund three posts – Consultant Paediatric Neurologist, Trial Coordinator and Research Physiotherapist.
We would like to thank Project Go, a Duchenne UK Family Fund, and all their supporters, for contributing funds towards the Research Physiotherapist role.
The DMD Hub is building networks of support for the different people involved in running clinical trials, to support all the DMD Hub sites around the UK to run more trials, so more patients with DMD can access research.
This week, we’re pleased to be sharing details about one of these support networks: the DMD Hub Clinical Trial Coordinator Network. We’ll also be profiling three DMD Hub Trial Coordinators who all work at different DMD Hub sites supporting clinical trials.
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.