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: Kings College London
Type: Interview (online or in-person)
Description: This study explores the experiences of young people (18-25) living with complex health conditions. Previous work has identified key symptoms and concerns for individuals with these health conditions. This study is refining the questionnaire further by conducing an online or in person 1-hour interview seeing how the questions are interpreted and answered. Examples include; how has pain affected you, have you felt anxious or worried about your illness, etc. Feedback may lead to further improvements to the questionnaire.
Inclusion criteria:
Recruitment start date: 20/04/2016
Recruitment end date (approximate): 03/08/2026
Additional information: This study is funded by Cicely Saunders International, a charity focused on supporting research improving care and treatment of all patients with progressive illness or in palliative care. Participants will be reimbursed for travel or time and receive a £25 voucher after the interview.
Research Institution: Leeds Beckett University
Type: Online interview (45-60 mins)
Description: This study explores the experiences of UK university students with muscular dystrophy. Participants will take part in a online interview about academic and social life, the support they receive, and how this affects their day‑to‑day activities. The aim is to understand challenges and improve support and social participation at University.
Inclusion criteria:
Research Institution: Thymia Limited
Type: Testing a new method to detect fatigue
Description: This study is testing whether analysing voice patterns can help detect fatigue in people with generalised myasthenia gravis (gMG). Participants will complete 16 short online assessments over four weeks, each taking about 15 minutes. These involve questionnaires and recording your voice on any device. Researchers will use artificial intelligence to look for voice changes linked to fatigue.
Inclusion criteria:
Additional information: This study is funded by a pharmaceutical company called UCB. Participants will receive a total of £165 for completing the whole study.
Research Institution: University of Glasgow
Type: Online interview (45-60 minutes)
Description: Are you a parent or carer of someone with a neuromuscular condition who uses a wheelchair full-time? The team want to hear your views about DXA bone scans and explore ways to improve the scanning process.
Inclusion criteria:
Additional information: Participants will receive a £20 voucher for taking part. We are funding this study.
Research Institution: University of Gloucestershire/Astor Bannerman
Type: Interview
Description: Developing accessible equipment that meets the needs of people living with physical disabilities is so important. This study will gather insights from families to learn more about the impact of physical disabilities on everyday life, with a focus on bathing and toileting/changing, both at home and at school. The study will also explore how experiences and school participation can be improved through effective equipment provision. This will be fed back to Astor Bannerman who develop these types of equipment.
Inclusion criteria:
Research Institution: Manchester Metropolitan University
Type: 8 week online mindfulness programme
Description: Evidence suggests mindfulness interventions can support people living with chronic pain conditions to manage pain, help with anxiety and depression and improve quality of life. This study will assess if a 8 week online mindfulness intervention can support people living with Duchenne muscular dystrophy. Taking part includes 20 minutes of daily mindfulness, questionnaires at the start and end of the programme and a short interview at the end.
Inclusion criteria:
Additional information: Participants will receive £600 in vouchers at the end of the study.
Research Institution: Pathfinders Neuromuscular Alliance/Northumbria University
Type: Online interview and/or workshops
Description: This project aims to identify priorities and develop ways to improve social care for adults with neuromuscular conditions. The team want to hear thoughts from adults with neuromuscular conditions and informal carers to co-design solutions.
Inclusion criteria:
Additional information: Participants will receive a £25 voucher for participating in an interview and a £75 voucher for participating in a series of workshops.
Research Institution: MRC Toxicology Unity at the University of Cambridge
Type: Group to discuss thoughts and experiences with researchers
Description: Gene therapies have the potential to benefit people with many different conditions, thanks to their ability to be tailored for different genetic changes. Researchers want to hear from people living with muscle wasting conditions and their parents/carers to help make gene therapies as effective and safe as possible. You would be required to attend 2-3 meetings per year for 2-3 years and review documents by email. No scientific background is required, the researchers will explain the research in ways everyone can understand and there will be opportunities to ask questions.
Inclusion criteria:
Additional information: Members will be reimbursed for their time and travel expenses. £75 for a half-day meeting and £25 per hour for document review.
Research Institution: University of Sheffield
Type: Two online interviews (approx. 45 minutes each)
Description: Researchers are interested in hearing in stories of coming to ventilation or breathing support, what life is, or was, like using ventilation, and thoughts on wider issues affecting respiratory health. The interviewers have lived experience of ventilation. Taking part involves two online interviews around 30-60 minutes long.
Inclusion criteria:
Additional information: Vouchers will be given after each interview as a thank you for taking part.
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: Great Ormond Street Hospital
Type: 1 hour 1:1 interview (in person or online)
Description: For young people with complex health needs, moving from paediatric to adult intensive care can be a particularly vulnerable time, especially as there is not yet enough information on how to make this transition smoother for these patients and their families. The OPTICAL study aims to provide the necessary research for the development of clearer guidelines on ICU transition, and hence improve the experiences of patients and their families.
Inclusion criteria:
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.
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.
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.
