DMD Hub Clinical Trial Coordinator Network

The DMD Hub Clinical Trial Coordinator (CTC) Network was set up in January 2020 by clinical trial coordinators at the 11 DMD Hub sites.

The aim of the network is to provide a forum for clinical trial coordinators across the UK to support each other and share their experiences of running clinical trials.

A key focus for Duchenne UK, through the DMD Hub, is to bring gene therapy trials to the UK. We held a DMD Hub Gene Therapy Stakeholder meeting in November 2019, and it was clear the collaboration of skills and experience between sites through this network, would be crucial to the effective and efficient running of DMD gene therapy trials.

The CTC Network hold bi-monthly video calls, where key topics are discussed. They also have an online discussion group where members can post questions and share information outside of the scheduled calls. This has been exceptionally helpful for new clinical trial coordinators to draw on the experience of their colleagues from all UK DMD Hub sites, many of which have been running DMD trials for several years.

Future Plans for the network:

The DMD Hub team is planning to hold a face-to-face meeting for the CTC Network in 2021 to strengthen the links between the CTCs at different sites, when it is safe to do so.

The DMD Hub team is also planning a programme of training and education for the CTC Network, as these members of staff so often are not able to benefit from training opportunities for various reasons, including a lack of funding. Based on needs identified by the CTCs themselves, the DMD Hub  plans to run a three-year programme of tailored training and education for the Network, starting in 2021 and covering key topics relevant to their roles such as consistent costing of DMD clinical trials and gene therapy trial set-up. Alongside this programme, the DMD Hub also hopes to facilitate shadowing opportunities for CTCs to visit other UK sites and share knowledge, experience and good practice. This has already been piloted very successfully, so they hope to re-establish these visits when circumstances permit.

The CTC Network is an excellent opportunity for the DMD Hub team to engage with, disseminate information to, and obtain feedback from the DMD trial sites across the UK. It provides a valuable community of support for everyone involved and this is reinforced by good engagement from all 11 UK DMD Hub sites,. The collaborative approach of the Network aims to contribute to the concerted effort to bring better treatments to patients with DMD.

Anna Irvin, Clinical Trial Coordinator at the John Walton Muscular Dystrophy Research Centre and current DMD Hub Clinical Trial Coordinator Network Lead, spoke to us about her role and the CTC Network:

I have worked at the John Walton Muscular Dystrophy Research Centre as a Clinical Trial Coordinator for over 4 years and have the privilege of being part of an extremely experienced and dedicated multi-disciplinary team.

What was your experience before taking this role?

Part of my role involves coordinating the set-up of natural history studies and clinical trials across a number of rare neuromuscular diseases, including Duchenne Muscular Dystrophy, Spinal Muscular Atrophy, Limb Girdle Muscular Dystrophy and Pompe disease. I come from a background in research, having worked at the NIHR Clinical Research Network North East and North Cumbria and also worked on a number of academic research projects in Edinburgh, Durham and Newcastle following completion of my Masters in Psychology in 2008.

When I first started as a Clinical Trial Coordinator in 2016, it was at a time when the DMD Hub was in its infancy, but the very real effects were being felt as clinical trials in DMD were increasing in frequency, but the capacity of the Newcastle team was quickly decreasing. The ability to ‘refer’ clinical trials to the other DMD Hub sites when Newcastle was unable to accommodate these, due to capacity restrictions, was invaluable and meant that trials were not being turned away from the UK when Newcastle or London could not take them on.

Why is the DMD Hub CTC Network important?

It is increasingly evident when working as a Clinical Trial Coordinator that a consistent and collaborative approach to setting up clinical trials can have a great influence on set-up times. In Newcastle, for example, we started to develop a consistent approach to costing for our portfolio of clinical trials and this was a really efficient time-saver, as there was a clear baseline to work from when new trials came in. Working alongside the DMD Hub team, we collaborated with the CTCs at GOSH to harmonise this costing guidance specifically for Duchenne trials and this has evolved into the DMD Hub costing guidance that we now promote as a consistent costing standard for all DMD Hub sites to use when setting up clinical trials in Duchenne. This has allowed less experienced sites to benefit from the knowledge that has been developed at the Centres of Excellence. I currently lead the DMD Hub Clinical Trial Coordinator Network, developing the agendas for and chairing the bi-monthly calls and managing the Teams group. I believe that the Network is invaluable, as the more we can communicate and promote an unified approach to setting up DMD clinical trials across the UK, the faster and more efficiently we can get these trials set-up and available to patients. The CTC Network also helps to keep the DMD Hub Clinical Trial Finder (https://dmdhub.org/clinical-trial-finder/) up to date, so that patients and caregivers are kept informed about the status of trials across the UK sites.

By working together, I believe that we can continue to make the UK an attractive place to run clinical trials, in the hope that this will ultimately expand treatment options for patients and improve the lives of families living with Duchenne.

We would like to thank Anna for contributing to this update, and for her continued dedication to the CTC Network and the DMD Hub.

About the DMD Hub

Duchenne UK’s mission through the DMD Hub is to give everyone diagnosed with DMD access to research opportunities. In just four years, Duchenne UK has invested £2.7 million, this has funded 32 posts, brought more companies and income to the NHS through pharmaceutical studies, and helped recruit more than 250 boys to take part in DMD trials who otherwise may not have had that opportunity.

Our priorities for 2020 are:

• Bringing gene therapy trials to the UK
• Addressing bottlenecks in clinical trial set up
• Improving recruitment

To find out more about the DMD Hub visit www.dmdhub.org or read our DMD Hub Impact Report 2019: http://bit.ly/dmdhub2019