C2I 2023 Medical & Healthcare Winner: The SMART Suit

Winner of the C2I 2023 Grand Prix Award, the SMART Suit is a lightweight robotic exoskeleton to help patients who have experienced a loss of upper body mobility

Duchenne UK

Category: Medical & Healthcare
Project: The SMART Suit
PartnersDuchenne UK with Spinal Muscular Atrophy UK and The Inclusionaries Lab at The University of Liverpool

The 2024 C2I winner in the healthcare and medical category is The SMART Suit, a robotic wearable technology that can discretely and comfortably support arm movement for those with muscular diseases and a variety of other conditions.

Loss of upper body mobility seriously impacts people with Duchenne muscular dystrophy (DMD) and Spinal muscular atrophy (SMA), restricting independence and the ability to do many of the things they enjoy. Duchenne UK, Spinal Muscular Atrophy UK, and The Inclusionaries Lab at The University of Liverpool are now working together to create The SMART Suit to return some of this independence, particularly for the many young people affected by these neuromuscular diseases (NMDs).

The project has its roots as far back as 2018, when Duchenne UK invested £70,000 in a project led by Solid Biosciences to develop a prototype exoskeleton to boost upper body strength for people with DMD. That soft exoskeleton prototype was based on Twisted String Actuator (TSA) technology created by the Stanford Research Institute. TSAs - essentially strings of fabric twisted together to boost strength - have the benefit of being cheap and lightweight with low energy requirements, yet capable of delivering considerable power.

In 2022, Duchenne UK took over as the project lead. Following a £1.25 million award from the People’s Postcode Lottery’s Dream Fund and £800,000 from other donors, the organisation has progressed the arm assist project at a rapid rate. With testing and feedback from people with DMD and SMA, the partners have built four development prototypes to date and are continuing to evolve the design. A final SMART Suit device is on schedule for delivery by the end of 2025.

“In a world that put a man on the Moon 55 years ago and where we can do so much with our phones, technology should be transforming the lives of people with disabilities. Instead, it’s ignoring them,” said Emily Reuben, co-founder and chief executive of Duchenne UK.

“I feel that neglect brutally as I see my teenage son lose his ability to use his arms, and there is nothing to help him. Nothing to help him maintain his ability to look after himself and do the things he loves. I am determined to change that and so appreciative to be partnering with Spinal Muscular Atrophy UK and the University of Liverpool on this work.”

While SMA is quite different to DMD as a condition, both are NMDs that can have devastating impacts on both lower and upper limb function. But where loss of leg function can be tackled with devices including wheelchairs, devices for arm assistance are practically non-existent.

Exoskeletons have long been explored for military and industrial purposes, but these are often bulky devices, designed to enhance able-bodied activity rather than help those with declining limb function. The SMART suit is aiming to assist people whose ability to carry out everyday tasks is slipping away, meeting functional requirements but also addressing their social and aspirational needs.

- Duchenne UK

Working with the University of Liverpool’s Inclusionaries Lab for user-centred design research - as well as industrial design partner PA Consulting and healthcare market access partners Medipex and NIHR Devices for Dignity - the project has developed a lightweight exoskeleton that relies heavily on fabrics, designed to be worn under clothing where possible.

Smart Suit has focused on the importance of engaging and involving end users in all stages of the product development to ensure that the end result meets their needs and expectations. And while commercial viability is of course essential, Duchenne UK and Spinal Muscular Atrophy UK are primarily motivated by the impact that the SMART Suit will have on the independence of young people with upper limb weakness.

The programme is managed by a dedicated project manager who sits within the DUK team. A key part of the role is to coordinate and facilitate the various partners, ensuring that the collaboration benefits from their input and expertise at all stages.

As with many collaborations, a core challenge has been keeping everyone up to date and involved in decision making. Regular meetings and updates have helped keep partners aligned on progress and aware of upcoming milestones or deadlines. Formal steering committee meetings take place every 6-8 weeks, which are also attended by the contracted SMART Suit delivery partners.

In the UK alone, more than 800,000 children and young people are living with a disability of some sort. Disabled people are more than twice as likely to be unemployed than the population at large. As well as increasing independence and removing barriers to education and employment, the SMART Suit has the potential to reduce the burden on NHS, social and support services, leading to wider economic benefits for society. It’s estimated by the project partners that around 500,000 people around the world living with DMD and SMA could benefit from the SMART Suit, plus a much larger number with other NMDs

The partners are committed to making the SMART Suit accessible to end users, with plans to subsidise the first batch of 50 units for use by people with DMD and SMA living in the UK. This will be followed by a clinical study using outcome measures and health economics tools developed specifically for DMD and SMA, to demonstrate the qualitative and quantitative benefits of using the SMART Suit.

Evidence from this study will then be submitted to the NICE (National Institute for Health Care and Excellence) Medical Technologies Evaluation Programme for approval and eventual reimbursement by the NHS. The long-term vision is to create a toolkit of health-economic and reimbursement models, service provision and support pathways, with routes to commercialisation and market to make it easier and faster for other charities to deliver products such as the Smart Suit to their beneficiaries.