Patient care & support

Duchenne UK chosen to join Aparito’s accelerator programme

4th November 2020

Aparito, the wearable tech company, has chosen Duchenne UK to work with them to harness the use of digital technology to help improve the outcomes of clinical trials.

Duchenne UK and PCD Family support group were selected by Aparito as the first two organisations to work with them on their Aparito Digital Endpoints Patient Group Accelerator Programme.

Aparito is one of the leading experts in using technology to develop digital endpoints that can be used in clinical trials.

Through the programme, Aparito will be working with both groups to:

  • identify the disease hallmarks that are specific to that disease community
  • identify the best way to capture and measure those disease hallmarks
  • address any gaps in the development of new medicines or repurposed drugs  

For a medicine to be authorised, pharmaceutical companies need to prove that their medicine is safe and effective. This is usually done by collecting data in a clinical trial, and by selecting certain measurements known as primary and secondary endpoints, which are measured over the course of a clinical trial.

These help demonstrate both the clinical impact of any treatment and are used to help persuade the regulators that they should approve new medicines. Assessments like the North Star Ambulatory Assessment and 6 minute walk test are usually used as primary endpoints. However, advances in technology mean that there may also be benefit in capturing data and information while a patient is going about their every day lives. 

Aparito uses a wearable device and app to monitor patient activity and collect clinical trial data. 

Like Duchenne UK, Aparito’s aim is to streamline the drug development process, to bring access to medicines faster.

Dr Elin Haf Davies, CEO of Aparito said

We are delighted that both Duchenne UK and PCD Family Support Group applied to our accelerator programme. The quality of applications we had from patient groups was very high and the team at Aparito went through a thorough selection process to ensure that we partnered with groups where we feel we can add maximum value to them. I'm very excited about what we can achieve with Duchenne UK and PCD Family Support Group, and as a company we just can't wait to get started on the projects.

Emily Crossley, CEO of Duchenne UK said:

We are very excited to have been selected on Aparito’s Patient Group Accelerator programme. We will be working with them to address the high unmet need of the DMD community, by co-developing new digital endpoints for clinical trials, which can be collected digitally and remotely. We hope this will help DMD patients on clinical trials report their progress in a simpler, easier and more complete way. 

Our work with Aparito will make use of the outputs from Project HERCULES to gather and measure patients’ quality of life, as well as building on Duchenne UK’s work on harnessing new technologies for the benefit of the DMD community, such as the Dream Chair partnership with Whizz-Kidz.

To see more about their Patient Group Accelerator Programme please watch this short video.

Please take a look at Aparito’s website (https://www.aparito.com/patient-group-programme) or get in touch with us if you have questions.


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 has one clear aim – to end Duchenne, a devastating muscle-wasting disease. As the leading Duchenne charity in the UK, we connect the best researchers with industry, the NHS and families to challenge every stage of drug development to make the incurable, curable. Together, we will find treatments and cures for this generation of patients with Duchenne.

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

Published on 4 November 2020

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