Access to treatments

DMD Hub Nurses Network

23rd November 2020

The DMD Hub is building networks for the different staff 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.

The Nurses Network was set up earlier this year by the DMD Hub and several research nurses from DMD Hub sites. With more DMD trials coming to more DMD Hub sites, the Nurses Network will support research nurses to improve patient care, increase access to trials and share best practice between sites.

Asyah Chhibda, from Leeds Teaching Hospital, and Tim Henderson, from Alder Hey Children’s Hospital, are coordinating the network. With DMD Hub Manager, Emma Heslop, they have set up quarterly teleconference calls with research nurses involved in delivering DMD trials at the DMD Hub sites.

The overall aim of the network is to facilitate learning, and help members gain valuable skills in various aspects of running clinical trials.

One of the key focuses for this year is to improve patients’, and their families’, experience of taking part in clinical trials. The Network are planning a training programme to better support families throughout their trial experience, from deciding whether or not to participate in a trial, throughout the duration of trial, and afterwards, especially if a trial is terminated. As a result, the research nurses will be trained and skilled to fully support families who have invested a lot of time, effort and emotion in participating in trials.

Another focus for the network is to share best practice amongst sites. The experience of the research nurses in conducting DMD clinical trials varies from site to site. It has been agreed that the more experienced DMD Hub centres would arrange shadowing visits for the newer sites to allow sharing of best practice for the portfolio of complex trials that are ongoing. Unfortunately, this has been delayed by COVID-19, but they are planning for this programme to be established in 2021.

The network will also be an important part of the DMD Hub’s new recruitment procedure, helping to centralise recruitment across the 11 DMD Hub sites, and provide fair and equitable access to clinical trials for patients in the UK.

We, at the DMD Hub and Duchenne UK, hope that the DMD Hub Nurses Network will develop stronger communication between sites and increased training opportunities. This will support the DMD Hub’s mission to run more trials, so more patients with DMD can access high quality research.

Tim Henderson, DMD Research Nurse, Alder Hey

Tim is a DMD research nurse, working solely on DMD clinical trials since 2018. Prior to this, Tim qualified as a children’s nurse in 2003, working in oncology for 9 years, before moving into clinical research. Working in the newly built Clinical Research Facility in 2012, he has worked on a variety of clinical trials, ranging from oncology, to gastrology, to endocrine and rheumatology. Throughout Tim’s time in research, he began to work closely with the upcoming DMD trials with Dr Spinty and quickly developed a real interest and passion in this area of research and remains committed to helping patients access the latest clinical trials to find a cure for DMD.

Asyah Chhibda, Children’s Research Nurse, Leeds Children’s Hospital

Asyah has been working in the Childrens Research Team at the Leeds Children’s Hospital since 2017, leading on several paediatric trials in DMD. She is incredibly passionate about changing the outcomes and improving health for children and young people, and being part of the DMD Hub Nurses Network allows us to contribute to and share best practice and ideas to help achieve this.

She was recently awarded a place on the Florence Nightingale Windrush Leadership Programme, and as part of the programme she is undertaking a Quality Improvement project looking at improving uptake of research amongst Black, Asian and Minority Ethnic community. The DMD Hub are also interested in this area as we know that BAME participation in research can be improved.

Katie Waller, Research Nurse, The John Walton Muscular Dystrophy Research Centre

Katie is a research nurse based at the John Walton Muscular Dystrophy Research Centre in Newcastle. She started working with the team in 2016 as lead nurse on several paediatric clinical trials for children and young adults with DMD, including the Testosterone, SIDEROS and Vision 2b studies.

She told us that “Being part of the DMD Hub Nurses Network provides an excellent opportunity to learn from other research nurses who are also working on DMD clinical trials. It is a supportive network to share best practice between peers, where the more established sites are able to support those with less experience of working on clinical trials. The opportunities that are planned, including shadowing visits and training days, will play an important role in education and will help to ensure a highly trained and skilled workforce of research nurses. It is also an excellent forum to discuss recruitment of patients to clinical trials, and refer patients to other sites in order to boost capacity to ensure as many eligible patients as possible are given the opportunity to be recruited to a clinical trial.”

Katie Groves, Trainee Advanced Nurse Practitioner, Great Ormond Street Hospital

Katie is a neuromuscular research nurse who has oversight of the portfolio of studies and is currently undertaking her Advanced Nurse Practitioner training. Once qualified, she will be able to review the patients on trials and support the medical team.

She links in with the DMD Hub Nurses Network regularly. Katie told us “It’s a really good forum to share ideas, experience and also discuss about increasing recruitment across centres”. With 11 centres carrying out DMD clinical trials and gene therapy trials expected in the UK in 2021, this network will be very important in helping to manage capacity and promoting communication between sites across the UK.  

The DMD Hub and Duchenne UK would like to thank the more than 20 research nurses in the network, including Tim, Asyah, Katie and Katie, and for all the work you do to help the DMD community.


What is Duchenne Muscular Dystrophy?

Duchenne muscular dystrophy (DMD) is the most common fatal genetic disease diagnosed in childhood. Children born with DMD cannot produce the protein dystrophin which is vital for muscle strength and function. Muscle weakness starts in early childhood. Many use a wheelchair by around the age of 12. As deterioration continues it leads to paralysis and early death, often in their 20s. It almost exclusively affects boys. There is no treatment or cure. In the UK there are around 2,500 boys affected and around 300, 000 worldwide. It is classified as a rare disease.

Who are Duchenne UK?

Duchenne UK has one clear aim – to end Duchenne, a devastating muscle-wasting disease. As the leading Duchenne charity in the UK, we connect the best researchers with industry, the NHS and families to challenge every stage of drug development to make the incurable, curable. Together, we will find treatments and cures for this generation of patients with Duchenne.

Our president is HRH The Duchess of Cornwall. Our patrons include the broadcasters Krishnan Guru-Murthy and Mary Nightingale, and the sports stars Owen Farrell, Kris Radlinski and Andy Farrell. 

We need your help, because we need to keep funding promising new research.

How to donate?

Duchenne UK is entirely reliant on donations to fund research for treatments and a cure to DMD. This can be done via:

  • Direct Debit – Duchenne Direct
  • Individual Donation – Donate
  • If you are a family or friend affected by DMD you can set up your own fund with Duchenne UK – Family and Friend Funds
  • Take part in one of our fundraising events – Events
  • Text DUCHENNE to 70085 to donate £5. This costs £5 plus a std rate msg.

For more information visit www.duchenneuk.org

Published on 23 November 2020

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