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’s ambition through the DMD Hub is that everyone in the UK diagnosed with DMD is given the opportunity to take part in research.
In 2014 Duchenne UK teamed up with Newcastle and Great Ormond Street hospitals to address a chronic lack of clinical trial capacity for Duchenne Muscular Dystrophy (DMD) in the UK. Despite there being a wealth of knowledge and experience at both these sites, they were turning away trials for lack of doctors and nurses.
This was not acceptable to us, so, in a ground-breaking collaboration with the NHS and NIHR, we created the DMD Hub.
To date, we have invested more than £2.7 million into the DMD Hub, supporting patients, sites and industry partners.
NINE sites have now joined the DMD Hub and we are delighted to say that in just THREE years, we have funded 30 posts, and helped recruit more than 250 boys to take part in trials, who otherwise would not have had that opportunity. We have also brought more companies and income to the DMD Hubs sites through pharma studies.
We keep in constant touch with the sites so that we can update our clinical trial tracker where patients can find up to date information on clinical trials in the UK.
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.
Nadia’s role on the team has been to take over the running of more than 20 different neuromuscular clinics, freeing up the clinical team at the hospital to focus on DMD research. She has also developed a database to help more efficiently select patients for trials and audits.
Cristina has also been instrumental in developing Leeds’ clinical research team, including undertaking the majority of clinical assessments and developing checklists to assist in recruitment from outside the region. This has helped ensure that families attending screening visits have a clear understanding of the inclusion/criteria for specific trials and that meaningful pre-screening discussions with families can take place, reducing the need for families to travel to additional appointments or be unnecessarily disappointed should a trial not be suitable.
Both roles, funded by the DMD Hub, have been key in helping the neuromuscular team run more efficiently, increasing the number of boys being recruited to trials, as well as expanding capacity at the site for more trials to be undertaken.
Over the past two years, Leeds has run 10 clinical trials, including For-DMD, which aims to establish the best steroid regime, and Vision-DMD, testing a potential alternative to corticosteroids (the only current treatment available for DMD). They have recruited 29 patients to interventional studies with 18 being recruited after the funding was granted in November 2017.
Our innovative staged funding model encourages DMD Hub posts to be sustained by the NHS Trust once the grant has ended. This model has worked successfully at Leeds, they have seen the benefit, so the Trust has agreed to take up the funding for both posts, and to make Cristina’s post a consultant’s post.
Leeds will also be trialling a recruitment procedure developed in collaboration with Duchenne UK and the DMD Hub to ensure fair and equitable access to clinical trials for all patients. As one of the key opinion leaders in the neuromuscular field, Dr Anne-Marie Childs is actively involved in helping develop the DMD Hub Standard Operating Procedure (SoP). The SoP will be trialled at Leeds and then rolled out across the whole DMD Hub network. We look forward to bringing more news on this in the coming months.
We would like to thank Dr Anne-Marie Childs, Nadia, Cristina and the NM team in Leeds for their incredible hard work in helping the DMD Hub change the clinical trial environment in the UK and to give every patient the opportunity to take part in research.
For more information about Leeds, the team there and the trials they are running visit: https://dmdhub.org/hub-sites/where-are-the-dmd-hub-sites/leeds/
We responded to the needs of patients who were struggling to find out information on clinical trials and where they were happening. So we launched the DMD HUB WEBSITE DMDHUB.ORG, to provide patients with trustworthy and up to date information about clinical trials in the UK.
The website provides FAQs on what to consider before joining a trial, there is also an interactive map with information on all the DMD Hub sites.
DMDHUB.org also has sections for hospitals and drug development companies to support them to setup and run clinical trials.
We look forward to keeping you updated on the DMD Hub.
Use the clinical trial finder to find every existing and pending clinical trial for Duchenne in the UK: https://dmdhub.org/clinical-trial-finder/
To find out the latest news from the Hub, you can sign up to our newsletter here: https://dmdhub.org/join-the-hub/