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: The National Institute for Health and Care Excellence (NICE) are looking for people with lived experience to join their Quality Standards Advisory Committee. This committee is updating NICE quality standards, which aim to improve the quality of health, public health and social care within in the NHS.
Inclusion criteria: Have personal experience, or a relative, unpaid carer of someone who has used treatment or care through the NHS, or an advocate or officer of a relevant voluntary organisation or support group.
Additional information: Lay members are expected to attend monthly committee meetings (mainly by Zoom but occasional meetings will be held in-person). Members will receive payment for attending these meetings.
Deadline: 9 February 2025
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 Institution: John Walton Muscular Dystrophy Research Centre
Type: Online Survey
Description: This study aims to better understand how being a carrier of changes in the DMD gene affect people in their daily life. It will also look at the impact of caring for a person affected by Duchenne or Becker muscular dystrophy on physical symptoms and mental health.
Inclusion Criteria: Females who have a change in the DMD gene and females who are carers of someone with DMD or BMD (with or without a DMD gene change)
Description: This is your chance to shape the NHS and future of healthcare in England. The UK gov wants to hear from you to build its 10 Year Health Plan. Help us share the experiences of the muscle wasting and weakening community.
Inclusion Criteria: The portal opened on 21 October 2024 and will run for several months. Everyone over the age of 16 living in England can take part.
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 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: 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.
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.
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.
