What is the DMD Hub?

The DMD Hub is a network of trial sites with trained staff which are funded to carry out clinical trials for DMD.

How we work

The DMD Hub uses existing UK clinical trial expertise to provide a central resource offering advice, guidance and training to sites less experienced in running DMD clinical trials.

The DMD Hub engages with key stakeholders at sites and in industry. We facilitate communications between them to accelerate trial readiness. This has already increased the number of UK sites which run DMD trials.

Duchenne muscular dystrophy

Duchenne muscular dystrophy (DMD) is the most common fatal genetic disease diagnosed in childhood. The disease almost always affect boys, and they tend to be diagnosed before the age of 5.

Duchenne muscular dystrophy is classified as a rare disease. There are around 2,500 patients in the UK and an estimated 300,000 sufferers worldwide.

For more information of Duchenne please visit: www.duchenneuk.org

History

Before the DMD Hub was launched, DMD clinical trials were only conducted at Great Ormond Street Hospital in London and the Newcastle upon Tyne Hospital.

This meant that only a few clinical trials could be conducted for DMD. So very few patients were able to participate in trials each year.

In 2016, Duchenne UK launched The DMD Hub. 

We are now working with staff at the two original sites to develop a network of sites across the UK. They are providing expert DMD advice and training to enable new sites to begin running trials. This will relieve pressure on the experienced sites.

Within the first year of operation, the DMD Hub expects two to three new trial sites in the UK to be selected for industry-led DMD trials.

Our ongoing training at other sites should open more new opportunities in the future.

Ultimately, the mission of the DMD Hub is to ensure all patients with DMD, both children and adults, have access to clinical research trials.

We are also exploring the issue of sustainability and expanding the model to other rare neuromuscular diseases.

Read more here about the Key Partners involved in the DMD HUB.