Duchenne muscular dystrophy is a genetic muscle wasting disease that begins in childhood and mainly affects boys. It usually renders patients unable to walk by age 12, and carries an average life expectancy of 26 years.
In the UK, 2,500 people currently live with the disease, and despite significant recent developments in treatment options, there is no cure for Duchenne.
Wearing the suit will be like having your own personal neurologist studying you day and night. We hope it will lessen the time it takes to figure out if a new treatment is working so that new treatment options are more quickly available.
– Dr Aldo Faisal Principal Investigator
Now, the Duchenne Research Fund has awarded experts £320,000 to develop and test a bodysuit that measures movements during everyday life, in a number of boys with and without Duchenne.
The funding will help principal investigator Dr Aldo Faisal run a 12 month clinical trial, during which time the boys will wear the suit 24/7 on selected days, allowing it to measure how their body interacts with the world around them.
The bodysuit will feed data back to the research team in real time, where they will use artificial intelligence to make sense of data patterns and determine whether any new treatment regimes are working. From there, doctors can make better informed decisions on treatment.
It will also cut down on the amount of time taken to test new treatments, which will drive down the costs of future clinical trials.
Dr Faisal, from the Departments of both Computing and Bioengineering at Imperial College London, said: “Wearing the suit will be like having your own personal neurologist studying you day and night. We hope it will lessen the time it takes to figure out if a new treatment is working so that new treatment options are more quickly available.”
The condition can be difficult to treat as it progresses slowly and each patient responds uniquely. Clinicians currently gauge disease progression ‘by eye’ instead of using measurable and objective methods in a real-world setting. Therefore, the process of developing new therapies is often slowed by the fact that it takes a long time to determine if a treatments works well or not.
Dr Faisal said that by providing a more effective way to measure disease progression, doctors will be better informed when making decisions on treatment and management of the condition.
He said: “With this vital research we want to help complement or even replace classic monitoring methods and help to improve the quality of life and options available to these children.”
This study will be carried out as a clinical study at the Clinical Research Facility of Great Ormond Street Hospital Trust, overseen by Dr Valeria Ricotti, Honorary Clinical Lecturer at UCL’s Great Ormond Street Institute of Child Health, and Professor Thomas Voit, Director of UCL’s Great Ormond Street Institute of Child Health.
Source : Imperial College London