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Testosterone Extension Study

Joining Jack has invested £10,000 as part of a £228,000 study to address the use of testosterone as a treatment for Duchenne Muscular Dystrophy.

The £228,562 grant comes from Joining Jack's charity partner Duchenne UK and will be used to fund an extension to the current clinical trial studying the effects of the use testosterone in DMD patients

Steroids are part of the recognised standard of care in treating Duchenne Muscular Dystrophy (DMD). But long-term use of steroids causes a number of side effects including delayed puberty. Testosterone is sometimes given to make boys begin going through puberty.

As the life expectancy of DMD patients increases, more young men are looking to establish relationships and lead independent adult lives. We are part-funding this research to ensure boys are given the correct hormonal treatment to allow them to develop properly.

The funds will support the clinical trial at the John Walton Muscular Dystrophy Research Centre (JWMDRC), led by Prof Volker Straub and Dr Claire Wood, treating 15 adolescents with DMD with testosterone to induce puberty. You can read more about the trial here on the DMD HUB website. As well as looking at the effect of testosterone on pubertal development, growth, muscle strength and function, bone mineral density and body composition, the trial is looking at the mood, quality of life and well-being of patients to assess their satisfaction with the benefits of the treatment compared to the side effects.

The initial trial was funded by Duchenne Now.

Alex Johnson, co-founder and co-CEO of Duchenne UK said:

"This is an important study that could impact on the quality of life for young men with Duchenne Muscular Dystrophy. We would like to thank our partner charity, Duchenne Now for initiating this valuable project and we are pleased to be able to help fund the next stage."

Emma Hallam, founder of Alex’s Wish said:

"Having a son approaching 13 years old who has Duchenne and is on daily steroids, I understand the impact of delayed puberty – especially its impact on muscle strength and bone density.  I know how important it is that we understand the effects of Testosterone and Alex’s Wish fully supports this project. We are so thankful to our supporters for enabling us to invest in such an important project leading us to new treatments that could help improve wellbeing and life expectancy."

The grant will pay for the extension study of this trial to look at the longer term effects of testosterone treatment following earlier treatment to induce puberty. The extension study will investigate whether testosterone treatment to induce puberty will be enough to support long term testosterone production, or whether further treatment with testosterone is needed for patients on long-term steroids to keep producing testosterone, even if puberty was successfully induced.

If this study can prove that Testosterone for pubertal induction is an effective treatment to address delayed puberty, then we hope to see the use of testosterone included in the standards of care for adolescents with DMD.

Other partner charities and family funds who supported this Duchenne UK project are: Alex’s Wish, Caring for Connor, Duchenne Now, Jacobi’s Wish, Smile with Shiv and Team Felix