Searching for a cure, Improving lives

The ‘Newcastle Plan’ Patient Organisation Meeting

Posted on: September 29th, 2015 | 0 comments

UK & Irish Duchenne patient organisations were yesterday joined by Professor Kate Bushby, members of Treat NMD and William Van’t Hoff from the National Institute of Health Research (NIHR), to move forwards the implementation of the ‘Newcastle Plan’, formulated and published in July.

This aims to ensure all patients, children and adults, living with Duchenne in the UK have access to clinical research opportunities within the next five years. It is further inclusive of a shorter term strategy to prevent the UK turning away clinical trials within a one year time frame.


Yesterday’s discussions were enormously constructive with stakeholders exploring the viability of ‘Pump Prime’ funding from patient organisations, and evaluating which clinical centres and trial sites could strategically benefit.

Research into Duchenne is at an unprecedented stage. It is critically import that we solidify the UK as one of the ‘go to’ countries for clinical trials in Duchenne, enabling emerging and innovative treatments to be developed as quickly as possible, and allowing all those affected by Duchenne in the UK to benefit.


The ‘Newcastle Plan’ was engendered by the collaborative discussions undertaken between patient organisations throughout the year and is broadly reflective of the collective will of the Duchenne community. Action Duchenne are committed to the maintenance of this collaborative approach and will continue to drive forwards this initiative in partnership with all the stakeholders involved. We are delighted to support this collective approach to boosting clinical trial capacity in the UK.


A huge thank you to Joining Jack, Duchenne Children’s Trust, Duchenne Research Fund, Duchenne Now, Alex’s Wish, MDUK, Duchenne Family Support Group, Harrison’s Fund & Join Our Boys for their support and partnership in this collaborative undertaking. We also reserve a special thanks for Professor Kate Bushby and everyone at Treat NMD for their support in developing this strategy.

We will keep everyone posted with the progress of the ‘Newcastle Plan’ as our discussions move forwards.


For more information on the ‘Newcastle Plan’, our efforts to boost clinical trial capacity and the campaigns work of Action Duchenne, please contact, Aaron Revel (Campaigns Officer) 020 8556 9955 or via

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