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.
Research Institution: Manchester Metropolitan University
Type: Questionnaires, food diary and optional in-person physical assessments
Description: This research study is investigating the relationships between diet, physical function, and quality of life in individuals with Becker muscular dystrophy (BMD). Taking part will involve completing questionnaires and a food diary at home. For participants who are local to Manchester or the Neuromuscular Centre (Winsford, Cheshire, UK) physical assessments will be completed.
Inclusion criteria:
Additional information: Participants who wish to take part in the in-person physical assessments can have travel expenses reimbursed. We are funding this study.
Research Institution: University of Oxford
Type: Natural history study – exploring how a condition progresses
Description: We currently don’t have enough information about how nemaline myopathy usually progresses and which tests to use to show if any potential treatments work. This study aims to collect this information and work out which tests are the most useful to prepare for future clinical trials. Taking part will include four visits over three years, including assessments of general health, physiotherapy and questionnaires.
Inclusion criteria:
Additional information: Travel expenses may be reimbursed for visits outside of usual NHS appointments. We are funding this study.
Research Institution: University of Oxford
Type: Online interview (approx. 60 minutes)
Description: What is it like to be told your child has a genetic condition caused by a de novo (new) genetic change? Did it impact how you felt about having more children? The chance of a de novo change happening again in a future pregnancy is currently given as an average risk. We would like to talk to you about this and a new personalised approach and hear what you think would be the benefits and challenges. There are no right or wrong answers.
Either or both parents can participate. Fathers views welcomed.
Inclusion criteria:
Research Institution: Sites across the UK
Type: Clinical trial
Description: This trial is investigating if a new formulation of mexiletine, known as mexiletine PR, is safe and works for people with myotonic dystrophy. The trial will be 30-weeks long, with participants expected to visit the hospital 5 times. Eligible participants will be randomly assigned to receive either mexiletine PR or a dummy drug (placebo). After completing the 30-week trial, all participants, regardless of their initial group, will have the opportunity to receive mexiletine PR in a long-term extension study.
Inclusion Criteria:
• 16+ years of age (under 18s require approval from a responsible adult to participate)
• Diagnosed with DM1 or DM2
Additional information:
Travel to and from hospital visits as part of the trial may be reimbursed.
Research Institution: University of York
Type: Interview (online or in-person)
Description: This research study wants to hear from young people with a disability and mobility difficulties to find out more about their needs and experiences. This research aims to identify needs for support and the strengths, limitations and barriers to access of those currently offered.
Inclusion criteria:
Additional information: Participants who wish to do the interview in person can have travel expenses reimbursed.
Research Institution: BMD Hub and Newcastle University
Type: Survey
Description: The team want to hear the experiences of people with Becker muscular dystrophy (BMD). The survey focuses on the care they currently receive to help identify gaps and areas for improvement. The results will be shared at an international meeting bringing together the BMD community, which aims to develop international guidelines for best standards of care for BMD
Inclusion criteria:
Research Institution: University of Glasgow
Type: Online interview (45-60 minutes)
Description: This research study aims to identify challenges and facilitators in DXA scanning experience for non-ambulant individuals with neuromuscular conditions. The team wish to explore the information provided to individuals prior to and following the scan.
Inclusion criteria:
Additional information: Participants will receive a £20 voucher for taking part. We are funding this study.
Research Institution: University of Cardiff
Type: Survey
Description: The study is exploring what helps or hinders involvement in social activities of people with neurodegenerative conditions. The researchers want to hear about individuals experiences with the aim of identifying key challenges and opportunities for improving social participation and reducing isolation.
Inclusion criteria:
Research Institution: University College London
Type: Survey
Description: Researchers at UCL are investigating how weather changes, particularly heatwaves, impact individuals with neurological diseases. With the increasing frequency of extreme weather events due to climate change, they aim to understand the challenges faced by this group. By gathering insights into these experiences, the research seeks to develop strategies to better support and improve the lives of people with neurological conditions in the face of climate-related challenges.
Description: Add your (or child’s) data to a patient registry to help researchers run clinical trials and understand more about muscle wasting and weakening conditions. Being a part of a registry may also give you more opportunities to take part in research, such as testing new potential treatments.
Inclusion criteria: There are registries for many muscle wasting and weakening conditions. Anyone who has one of these conditions can register. To find out which conditions have registries and how to sign up, click the button below.
Research Institutions: Edge Hill University, University of Glasgow
Description: A team of doctors, researchers and parents 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 the team, either online or in person, or filling out an activity book. The researchers will work flexibly and use activities to help young people share their views.
Inclusion Criteria: Young people with Duchenne muscular dystrophy (DMD) aged 7-25 years and parents / carers in the UK.
Research Institution: Newcastle University
Type: Online interview
Description: Newcastle University want to find out more about the experiences of siblings of individuals with Duchenne muscular dystrophy. This will involve attending an online interview.
Inclusion criteria: Siblings aged between 11 and 25 years old and caregivers with at least one child with Duchenne and one child without. You can still take part even if your child/caregiver does not want to!
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
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.
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 above to find out more.
The list above 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.
