The DMD Hub’s Clinical Trial Finder brings together trustworthy and reliable information on all existing and upcoming trials for Duchenne muscular dystrophy in the UK.
Our Clinical Trial Finder has been designed for patients and caregivers, to be as accessible and comprehensive as possible. Every trial has information on outcome measures, inclusion criteria and an easy to understand lay summary. You can use search filters to find trials that are relevant to you and download a fact sheet for each trial. The information on each trial has been sourced directly from industry and hospitals and is verified by Duchenne UK and the DMD Hub management team.
Please note that the DMD Hub is not responsible for the direct recruitment of patients to trials. Although we work closely with sites to ensure the recruitment status for every trial is accurate and up to date, there may be a delay in updating the Clinical Trial Finder while the patient screening process takes place.
We recommend that UK patients/parent and caregivers register with the Central Recruitment Pilot Project, which will enable trial sites to contact you directly if you are eligible for a study.
The DMD Hub is not promoting any particular trial or therapy. You should always consult your neuromuscular consultant before joining a trial.
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= Fully recruited
= Recruiting
= Not yet recruiting
= Enrolling by invitation
This phase 4 clinical study is designed to assess the safety of Translarna, also known at Ataluren. This study will follow patients who are receiving Translarna as part of their usual care for 5 years. At the patients usual visits, data will be collected to determine the safety and effectiveness of Translarna.
This study is led by Manchester Metropolitan University and Duchenne UK and approved by the Manchester Metropolitan University ethics committee.
Scientific Rationale
Almost all men with DMD experience pain, which is a contributing factor to lower quality of life (QoL), particularly within the mental health domain. Psychosocial health issues are significantly more prevalent in DMD, with anxiety prevalence reaching 33%, depression prevalence at 19%, and the prescription of associated medication to 28% of men with DMD. Although poor mental health is multifactorial in nature, pain has been associated with both anxiety and depression in DMD. Beyond the behavioral support for higher prevalence of autism spectrum disorders, mental health support and pain management for those adult transitioners and men with DMD lacks emphasis, with currently only cursory mentions to mental health and pharmacological solutions to pain being advocated in the most recent standards of care.
Given the effectiveness of Mindfulness Based Interventions (MBI) within other conditions, MBI may represent a potential intervention for anxiety, depression, pain and QoL in DMD. In conditions with neurological impairment, interventions to support mental health are considered fundamental to improving quality of life. Relevant to DMD particularly, MBI have been shown to:
• Improve mental health and quality of life in people with spinal cord injury
• Reduce psychological distress
• increase self-protective awareness of early physical symptoms and increase proactive condition self-management and autonomy
The current research aims to assess the feasibility of an eight week online mindfulness intervention for people living with DMD (co produced using PPIE and informed by evidence on the efficacy of mindfulness in other chronic health conditions).
Stay informed about the latest DMD clinical trials and studies and keep up-to-date with the latest news from the DMD Hub.