DMD Hub COVID-19 Community Update
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.
UPDATE ON DMD HUB SUPPORTING CLINICAL TRIALS DURING COVID-19
During the COVID-19 pandemic, the DMD Hub has played a key role in maintaining communication between trials sites. We helped share information, procedures and best-practice with sites, whilst working to keep the sponsors informed, providing a consistent message on behalf of the clinicians and keeping the patient community updated via the clinical trial finder and Duchenne UK’s webinars.
In March, we announced that all DMD Hub sites had implemented restrictions on screening, randomisation and study visits, and for patients to contact sites directly. It has not been possible to have a single procedure for dealing with clinical trials, as every site needs to follow their own local trust guidelines. Despite recruitment being halted on all clinical trials, sites have been able to continue some clinical trial activity.
Since April, Dr Michela Guglieri, Consultant Neurologist at the John Walton Muscular Dystrophy Research Centre in Newcastle, has been working with consultants at all DMD Hub sites to coordinate the key messages relating to clinical trials at the individual sites.
Most recently, we have been working hard to plan the re-opening of clinical research facilities, and considering patients and families concerns about taking part.
The DMD Hub has also created a new toolkit on COVID-19 related articles, including exemplar action plans, as well as guidance from key organisations such as the WHO and World Muscle Society.
To find out more, please register for our DMD Hub webinar on Wednesday 24th June at 6pm: https://us02web.zoom.us/webinar/register/WN_7EwUZQ5zTeWZBzNDlU45Hg
Our co-founder, Alex Johnson and Emily Crossley from Duchenne UK, will be speaking with Dr Michela Guglieri, and Emma Heslop (DMD Hub Manager) to provide updates on the DMD Hub and clinical trials.
UPDATE ON POSTS FUNDED THROUGH THE DMD HUB
Before the COVID-19 pandemic hit, several new posts funded by the DMD Hub were recruited at sites across the UK, including:
- Clara Esposito (Research Physiotherapist, Evelina London Children’s Hospital)
- Charlotte Lilien (Research Physiotherapist, MDUK Oxford Neuromuscular Centre)
- Emily Whitehouse (Clinical Research Fellow, Royal Manchester Children’s Hospital)
- Tracy Langan (Trial Coordinator, Royal Hospital for Children Glasgow)
- Daniel Carranza (Clinical Research Fellow, Royal Hospital for Children Glasgow)
- Rebecca Hart (Research Physiotherapist, Royal Hospital for Children Glasgow)
- Naomi Barkby (Research Nurse, Leeds Teaching Hospital)
Duchenne UK has now invested £2.7 million to expand clinical trial capacity in the UK.
Many of the posts funded by the DMD Hub have been continuing to work on clinical trials. Emily Whitehouse, the new Clinical Research Fellow at Manchester, has been running virtual clinics via telephone and has been working on the BPNA distance learning neuromuscular course. Tracy Langan, the Trial Coordinator at Glasgow, has been working on trial documentation, gathering consent from patients, and updating trial amendments.
Some posts funded by the DMD Hub have been redeployed to the front line to support the NHS through COVID-19. Clara Esposito, Rebecca Hart and Naomi Barkby have all used their knowledge and experience to help COVID-19 patients.
Clara Esposito, Research Physiotherapist, Evelina London Children’s Hospital:
“It was a daunting prospect to go to work on the Adult COVID ICU, since I hadn’t thought I would be working in an adult ICU setting ever again, but at the same time I was very thankful when I learned that the DMD Hub was happy for me to do so. I found the experience very rewarding as I felt I was doing my bit during this crisis.”
We would like to thank all the staff at every DMD Hub site. During this very challenging time they have continued to deliver clinical trials, support their hospitals through COVID-19 and enable the re-opening of clinical research facilities across the UK as soon as possible.
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