11th March 2020

Duchenne UK is pleased to announce a grant of £37,808 to Dr Anna Mayhew’s Neuromuscular Physiotherapy Team. The team are part of the John Walton Muscular Dystrophy Research Centre (a collaboration between Newcastle Hospitals NHS Foundation Trust and Newcastle University).

Children with Duchenne muscular dystrophy (DMD) often wear splints called ankle foot orthosis (AFOs). Splints, used in conjunctions with stretching, help them to keep the range of movement in their ankles for as long as possible.

When muscles around the joint shorten and become fixed this is known as ankle contractures. Contractures are common in patients with DMD and can often develop in boys as young as 4 or 5 years of age, so it is important we find the best treatments.

Our grant will support a pilot study to compare Ankle Foot Orthosis (AFOs) and Contracture Control Devices (CCDs) for managing ankle movement and delaying ankle contractures in ambulant boys with DMD. The study is also designed to compare boys’ experience of using these two different devices, as some boys find them uncomfortable.

The two types of splints to be tested in this study are shown here:

CCDs are dynamic, hinged splints, and have proven to be an effective alternative to static night-time AFOs in other conditions when traditional physiotherapy has been unsuccessful in contracture management.  However, local services are often reluctant to fund them, because of a lack of evidence and higher cost.

Our £37,808 grant will allow the Newcastle Neuromuscular Physiotherapy Team to start to develop an evidence base to demonstrate the performance of each splint and will help to understand how many boys would be needed in order to get a really meaningful answer in a future study. Such a study would guide clinical decisions regarding the best orthotics for patients with DMD.

Dr Anna Mayhew, Consultant Research Physiotherapist at the John Walton Muscular Dystrophy Research Centre said:

“As a specialist centre we see a lot of DMD patients and would like to provide more evidence based guidance to families and physiotherapists on an optimum orthotic regime for managing ankle contractures. We are aware that other methods exist to manage contractures and orthotics do not negate the need for a daily stretching programme. Dionne Moat, Senior Clinical specialist will be leading on this project along with the physiotherapy team in Newcastle.”

Sara Smedley, mum to Oscar, who has DMD, and Duchenne UK Patient Advisory Board member, said:

“We raised the possibility of CCDs for Oscar with our neuromuscular team back in September 2019, having noticed his ankle range deteriorate quite rapidly, despite consistent use of AFOs.  Although our neuromuscular physio thinks CCDs might help Oscar, we have so far not been able to get them for him. 

The difficulty is that although some centres use them as part of their standard care and there is anecdotal evidence of the value of CCDs, there is currently no trial based evidence that exists which supports them as a treatment for Duchenne.

This study is, in my view, a hugely important and worthwhile piece of work which could enable Oscar to have access to the best treatment to help maintain his ankle range and, in turn, prolong the time he is able to walk. ”

For more information about stretching and orthotics, please visit the Physiotherapy Advice – Muscle and Stretches section of our website (https://www.duchenneuk.org/physiotherapy-advice-muscles-and-stretches).

We would like to thank our partner charity Joining Jack and our family funds for supporting this project: Team Felix, Smile With Shiv, Team Oscar and Henry’s Hurdles.

NOTES FOR EDITORS

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 is a lean, ambitious and highly focused charity with a clear vision: to fund and accelerate treatments and a cure for Duchenne muscular dystrophy.

We are investing millions of pounds in research right now to bring treatments and a cure to help this generation. Duchenne UK is the largest funder of DMD research in the UK. We are also committed to accelerating the pace of research. 90p in every £1 raised is committed to research.

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