Hydrotherapy for boys and young men with Duchenne
Joining Jack has co-funded £118,000 as part of a £296,276 grant from our charity partners Duchenne UK to Dr Christian de Goede, Consultant Paediatric Neurologist at Royal Preston Hospital, and Dr Christopher Morse, Reader in Exercise Physiology at Manchester Metropolitan University, to investigate the impact of hydrotherapy (using water for health benefits) on boys and young men with DMD.
Hydrotherapy is generally recommended for everyone living with DMD. However, there is little reliable evidence that hydrotherapy benefits DMD patients’ mobility.
Some very limited studies, in small numbers of patients, have looked at the impact of hydrotherapy on 6-minute walk distance and indicated a potential benefit. However, there are many more potential benefits of hydrotherapy which are currently unknown. This lack of evidence means that there is a lack of provision across the UK for DMD patients to access hydrotherapy.
This new study will be conducted at Lancashire Teaching Hospitals in collaboration with Derian House Children’s Hospice, and at a second site in the North West, yet to be confirmed. It will last 24 months and will include 44 boys and young men aged over six-years-old and not receiving daytime ventilation.
This project was originally proposed as a ‘proof of concept’ study, meaning a smaller study with the data used to support a full trial. After discussion with Duchenne UK's Friends and Family Funds, it was decided to invest more in the project to make it a full clinical trial, given the importance of gathering this data to the community.
Dr de Goede has been very innovative in the trial design, ensuring that there is no ‘placebo’ arm – meaning that no patient will miss out on receiving hydrotherapy. Instead, each participant will have an observation period, where they won’t receive hydrotherapy, and then a period where they receive weekly sessions.
They will also be using the new DMD QoL measure, which was designed as part of Project HERCULES, to measure the difference on participants’ quality of life. The DMD Care UK project has also had a significant input on the trial design, which has been reviewed by the Physiotherapy Working Group.
Christian de Goede, the lead researcher says:
“Despite ongoing research, there is still no cure for Duchenne muscular dystrophy. However, there is a lot we can do to help and improve the lives of these boys and men. We believe hydrotherapy can make a difference and our aim is to provide the evidence for this. This will help to support the development and access to hydrotherapy which currently is very limited. We are very excited and cannot wait to start the study”
Duchenne UK and Joining Jack have used their influence across the DMD space, using our expertise from the Project HERCULES and DMD Care UK initiatives, to ensure this study will provide the answers that so many families need. Positive data from this trial will help to unlock access to hydrotherapy for people living with DMD across the UK.
Thank you to the following Family & Friends Funds and charity partners for contributing towards this project: Team Felix, Help Harry, Archie’s March, Jayden’s Army, Jacobi’s Wish, Team Oscar, Moving Muscles for Marcus, Backing Jack, Strength for Stanley, Chasing Connor’s Cure, Smile with Shiv.