Take part in sex matters in Duchenne project
Calling all people with Duchenne muscular dystrophy over the age of 13 years, professionals who work in Neuromuscular Teams, and parents of people with Duchenne.
You are invited to take in a new project, 'Sex Matters in DMD', that is funded by the Netherlands Parent Project group and is led by Dr Janet Hoskin from the University of East London along with Dr Jon Hastie from Pathfinders, Dr Claire Wood from Newcastle University, and the Rehabilitation Center for Neuromuscular Diseases and Aarhus University.
Adults with Duchenne
The team will be talking to adults with Duchenne in workshops and focus groups. So please consider taking part if you are an adult with Duchenne.
The first workshop is taking place on 14 May 2026 at the University of East London.
You can sign up here if you would like to attend and share your thoughts and experiences.
Health professionals from muscle teams and Duchenne parents
The team wants to hear from health professionals who work in neuromuscular teams and parents through online questionnaires.
They want to establish what good sexual health in Duchenne looks like, and to identify the barriers and enablers of this. Sexual health is often neglected in chronic conditions like Duchenne. The team is keen to hear ideas and expertise from health professionals and parents about how to change this.
If you would to take part, you will need to complete a questionnaire. The team will then send a second shorter questionnaire in a few months to ask you to agree/disagree and rank various challenges, solutions and issues related to sexual health. Here is the questionnaire for health professionals and the questionnaire for families.