The project list is updated regularly, so if nothing appeals to you at the moment, check back to discover new opportunities.
Project Disclaimer: Muscular Dystrophy UK shares research opportunities with our community to advance our understanding of muscle wasting and weakening conditions. However, we are not directly affiliated with the conduct, outcomes, or data management of these third-party projects. We encourage our community to carefully review each project’s privacy policy and consent forms before participating.
Description: Last year 1 in 4 people in our community told us they feel financially insecure. We’re now planning to produce a report on financial security to explore these experiences in more detail and lay out what is needed – around benefits, employment or other forms of support – to help people living with a muscle wasting or weakening condition feel financially secure.
As part of determining what the report will cover, we’d like to find out more about your experiences and what you think might help make you feel more financially secure.
Inclusion Criteria: We are looking for people of any age living with a muscle wasting condition.
Research Institutions: Edge Hill University, University of Glasgow
Description: We are a team of doctors, researchers and parents who are trying to improve understanding of nutrition in DMD and develop resources about nutrition with families of young people with DMD. There are different ways to share your views; you and/or your child can share your views in a short anonymous survey or by talking with us, either online or in person, or filling out an activity book. We will work flexibly and use activities to help young people share their views.
Inclusion Criteria: We are looking for young people with Duchenne muscular dystrophy (DMD) aged 7-25 years and parents / carers in the UK.
Research Institution: Newcastle University
Type: Online survey and/or online focus group.
Description: Newcastle University are interested in finding out more about the experiences of siblings of individuals with Duchenne muscular dystrophy. This is a two-phase project of an online survey and then online focus group. They are also looking for parents to take part.
Inclusion criteria:
Siblings aged between 11 and 17 years old. Caregivers over the age of 18 with a child with a genetically confirmed diagnosis of Duchenne and a child without Duchenne.
Research Institution: Surrey University
Description: Are you a parent/carer of a boy between the ages of 7-17, with a genetic diagnosis of DMD? Are you interested in participating in a carer programme addressing
behavioural/emotional difficulties experienced in DMD? This will involve taking part in a six week group programme.
If you are interested in learning more please email postgraduate researcher Andria Papageorgiou.
Research Institutions: 21 sites across North America, Europe, Japan, and New Zealand; UK sites include: University College London and St. George’s University of London
Type: In-person, observational study
Description: This is an observational study for participants with DM1 to evaluate the natural history of the condition over the course of 24 months. The study requires 3 visits at baseline, Month 12, and Month 24. Procedures include, but are not limited to: brief physical exam, blood and urine samples, vital signs, ECG, functional assessments, cognitive assessment, and questionnaires.
Inclusion Criteria:
• 18-70 years old, inclusive
• Able to provide informed consent
• Clinical diagnosis of DM1 or positive genetic test
Research Institutions: 4 sites in USA and 1 in Italy
Type: In-person, observational study
Description: This is an observational study to evaluate appropriate physical functional outcomes for children with CDM or ChDM. The study requires 4 visits at baseline, Month 6, Month 12, and Month 18. Procedures include, but are not limited to: brief physical exam, blood samples, vital signs, ECG, functional assessments, speech language assessment, and questionnaires.
Inclusion Criteria:
• Age neonate to 4 years, 11 months at enrollment
• Clinical and genetic diagnosis of CDM or ChDM
• Guardian willing and able to provide informed consent
Research Institution: University College Dublin and Muscular Dystrophy Ireland
Type: Online survey
Description: Exploring the psychosocial needs of individuals living with neuromuscular conditions. This includes quality of life, coping, social support, depressive symptoms, and anxiety symptoms. A secondary aim is to explore the impact of stigma in individuals living with one of these conditions.
Inclusion criteria:
18 years of age and older living with a muscular dystrophy or other neuromuscular condition. All locations – this study is recruiting internationally
Research Institution: Brunel University London
Type: Online interview
Description: This research study is seeking to learn more about people’s experiences of physical activity when living with a neuromuscular disease.
Inclusion criteria:
The DMD Hub is a network of trial sites with trained staff which are funded to carry out DMD clinical trials and research studies in the UK.
The hub uses existing UK clinical trial expertise, to provide a central resource offering advice, guidance and training to sites less experienced in running DMD clinical trials.
The DMD Hub engages with key stakeholders at sites and in industry. We facilitate communications between them to accelerate trial readiness. This has already increased the number of UK sites which run DMD trials.
The BMD Hub is aiming to develop a network of clinical care and research sites in the UK interested in and capable of delivering clinical trials in Becker Muscular Dystrophy (BMD).
The BMD Hub is a project coordinated by the John Walton Muscular Dystrophy Research Centre at Newcastle University, funded by Edgewise Therapeutics, based on the DMD Hub model and collaborating with UK patient organisations with an interest in dystrophinopathies.
Research Institution: Newcastle University
Type: Online survey
Description: Newcastle University are interested in finding out more about the experiences of caregivers of individuals with Duchenne muscular dystrophy.
Inclusion criteria: Parent/carer over the age of 18 with a child or children who has a genetically confirmed diagnosis of Duchenne.
Research Institution: University College London
Type: In person study
Description: UCL researchers are investigating the correlation between individual dystrophin gene mutations and behavioral and emotional difficulties in children with dystrophinopathies.
Inclusion criteria: Male, 7-17 years old, genetically proven diagnosis of Duchenne muscular dystrophy or Becker muscular dystrophy with a specific mutation (see study details) OR males 7-17 years old without dystrophinopathies, or any other neurological or psychiatric condition.
More than 110,000 people live with muscle wasting or weakening conditions in the UK. But at times, all of us can feel lonely, stressed and exhausted. Taking part in research projects helps you know that you’re not alone.
Your participation enables essential research, contributes to our collective understanding, and can lead to real-world impact. It is a chance to share your experiences and help change the future.
Every project is different and will require various levels of commitment, time and involvement. It’s a good idea to read about each option carefully before deciding which project or projects are right for you. You can click through using the links below to find out more.
The list below contains all the projects that are currently live and seeking participants.
If you like a project, you can find a link to sign up or an email to contact for each project. Use the email to learn more about the project and how to join.
The project list is updated regularly, so if nothing appeals to you at the moment, check back next week or month to discover new opportunities.
