Delivering education on clinical care and research in Duchenne muscular dystrophy to healthcare professionals
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The Duchenne Education in Care and Research Initiative (DECRI) is a comprehensive, accessible, reliable source of up-to-date education for all aspects of Duchenne muscular dystrophy (DMD), from care to clinical research.
This training and education programme is directed to multi-disciplinary healthcare professionals and clinical research teams who work with people with DMD. Our online platform is free to use upon registration, which you can access on the link above.
DECRI aims to improve patient outcomes and support research by strengthening awareness, knowledge and expertise among healthcare professionals in DMD care and research across the UK.
DECRI has been developed by Duchenne Hub and Duchenne Care UK and is led by a team within the John Walton Muscular Dystrophy Research Centre at Newcastle University.
The Duchenne Hub and Duchenne Care UK bring together the clinical and patient communities, engage with industry, regulators and other key stakeholders to improve care and research for all people living with DMD in the UK.
Duchenne Care UK is a collaborative initiative between the John Walton Muscular Dystrophy Research Centre at Newcastle University and Duchenne UK, embedded in the UK North Star Network. It is funded by Duchenne UK, Duchenne Research Fund and Joining Jack.
It is an innovative collaboration between clinicians and the patient community to develop,
agree and implement consistently high standards of care (SoC) for Duchenne muscular
dystrophy (DMD) in the UK context, endorsed by professional bodies. The UK SoC are based
on international care recommendations (Lancet Neurology, 2018) and developed into
practical, implementable guidelines based on evidence, expert opinion and experience.
Collaborative working, inclusion of patient representatives, consultation with clinicians
across the UK, consensus building, and a multi-disciplinary approach is integral to
success and impact.
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Established in 2016 in partnership between Duchenne UK and the John Walton Muscular Dystrophy Research Centre at Newcastle University, the DMD Hub is the UK clinical research network for Duchenne muscular dystrophy (DMD).
The Duchenne Hub exists to enable and accelerate delivery of clinical trials in the UK for the benefit of patients, clinical sites and industry. Existing UK clinical trial expertise provides a central resource offering advice, guidance and training to less experienced sites.
The Duchenne Hub engages with key stakeholders at sites and in industry, facilitating
communication between them to accelerate trial readiness, streamline clinical trial set
up and delivery and support the implementation of approved drugs into clinical practice.
This has increased the number of UK sites which run DMD trials.
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In this module, you will explore the background and natural history of DMD, understand its clinical presentation and progression, delve into the underlying genetics and the critical role of the dystrophin protein, and gain insight into the evolving landscape of clinical trials.
There is currently no cure for DMD, but a target for some new therapeutic strategies is to correct the genetic defect. This module will explore these types of therapies.
This module provides an overview of how corticosteroids work, their clinical benefits, and the considerations involved in long-term use.
The following companies have provided financial support for this education initiative, but have had no involvement in or influence over the content. Priorities for DECRI are set by the Duchenne Care UK and Duchenne Hub networks.
