We are pleased to announce that the Duchenne Research Fund has awarded an £80,000 grant to Parent Project Muscular Dystrophy (PPMD) to support its research into neurobehavioral issues in Duchenne – focusing on key areas such as learning, behaviour, depression and anxiety in Duchenne.
Although the physical challenges of Duchenne have been investigated extensively, the neurobehavioural and psychosocial issues that can result from the diagnosis are under-explored, despite their impact on everyday life for many people living with Duchenne and their families.
The term “neurobehavioural” relates to the way the brain affects emotion, behaviour and learning. Neurobehavioral and cognitive diagnoses are not uncommon in those living with Duchenne, but access to timely assessment, diagnosis and treatment can be difficult to obtain and varied in experience and outcome.
PPMD’s work aims to understand the intricacies of access to neurobehavioural treatment pathways affecting people living with Duchenne. Working in partnership with Certified Duchenne Care Centres in the US, the project aims to assess new and emerging knowledge in the field, and improve detection, diagnosis and treatment of conditions. The work funded by DRF is part of PPMD’s new Brain Initiative, which aims to ensure all people living with Duchenne have access to appropriate neurobehavioural care.
“We recognise that while there have been expansive advancements in routine clinical care alongside development of four approved therapies for the treatment of Duchenne, access to timely diagnosis and treatment for neurobehavioural conditions in Duchenne remains challenging. By optimising routine clinical care, problems with learning, behaviour, depression and anxiety have bubbled to the surface, but how we address these issues remains inconsistent and difficult to treat,” said Rachel Schrader, an experienced paediatric nurse practitioner and PPMD’s Vice President of Clinical Care and Education. “We are optimistic that this new initiative will help move the needle in how we tackle these important issues that affect everyday life for people living with Duchenne. We recognise there is much work that needs to be done in this arena, and we are excited to push forward in optimising this area of care for the Duchenne community.”
“We are pleased that the Duchenne Research Fund has partnered with PPMD to support this vital research and tackle an under-explored aspect of Duchenne muscular dystrophy,” said Dr Sarah Shelley, medical trustee at the Duchenne Research Fund. “Our charity is committed to funding research to improve the lives of everyone living with Duchenne. We look forward to following the progress of PPMD’s work in the assessment and care of neurobehavioural diagnoses in Duchenne.”