Our new state-of-the-art data collection platform

By Emily Reuben OBE, Co-founder and Chief Executive of Duchenne UK

Transformative data

We believe in the transformative power of data on people’s lives, and we want to transform the lives of people living with Duchenne muscular dystrophy (DMD) in the UK through data.

This is why we are building an innovative, user-friendly and user-centric data platform to collect robust, longitudinal patient data on DMD and making it accessible to patients and families, clinicians and the wider research community.

Our platform is empowering people living with DMD and their families to make the best, informed, choices about their care, quality of life and participation in clinical research. The platform will create data that can help clinicians improve DMD clinical care and researchers to develop better and more effective treatments.

We are delighted to announce the launch of this new programme, in which we will leverage half a million pounds awarded to us from the Government’s UK Research and Innovation towards the development of the platform, as part of an international project known as the Patient Lifestyle and Disease Data Interactium (PaLaDIn).

State-of-the-art data collection platform

Over the next year, we are going to create a state-of-the-art data collection platform to:

It will launch next year, and you will be able to join it.

The platform will integrate our Central Recruitment Database which matches people with trials, which many of you are already registered with, to help give you access to trials. If you are not registered yet on the Central Recruitment Database, please do so in the interim.

For those of you currently registered on the Action Duchenne curated patient registry (UK DMD Registry), we will be working closely with Action Duchenne over the coming months and communicate with you regarding next steps. The UK DMD Registry remains open but will stop taking registrations once the new data platform is launched, and we will support the transition from one to the other to make it as seamless as possible for those of you who are registered with it. We will be in touch in due course.

We are united and determined to build this new, transformative resource for the community.

Published on 4 March 2024

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