Duchenne UKConnect
Our Duchenne UK Connect is a health platform and app to empower you and accelerate research and future treatments.
It will be a vital resource for our community, available in Web and App Stores.
About the platform
Living with Duchenne muscular dystrophy can feel overwhelming at times. There’s so much to keep track of medical information, care plans, appointments, and research opportunities.
Families often tell us that managing all this while staying informed and connected can be stressful. That’s why we created Duchenne UK Connect which will be launching in September.
This new platform brings together Duchenne UK's key programmes, resources, research opportunities and emergency support tools in one place.
It’s designed to make life easier for people living with Duchenne and their families, by helping to stay organised, informed, and empowered.
Built with the community, for the community
Duchenne UK Connect wasn’t built in isolation. We worked closely with patients, caregivers, and clinicians to understand what really matters. Their feedback shaped key features like family accounts and a simple, easy-to-use design.
Our goal is to give people with Duchenne and their families the tools that genuinely make a difference in day-to-day life.
Why it matters
Managing health information can be complicated. With Duchenne UK Connect, important documents can be securely stored and organised such as genetic reports, clinic letters, medication details all in one place. No more searching through piles of paperwork when something is needed urgently.
There is full control over personal data, the option to share it with family members, schools, clinicians, or emergency services.
Key benefits
For the first time, Duchenne UK has brought together all the programmes it has created and funded into a single, easy to use platform.
It is more than a tool, it’s a commitment to making life easier for people with Duchenne and their families. By bringing together health management, research access, and trusted resources, we hope to give confidence, control, and support every step of the way.
Duchenne UK Connect is designed with patients and families for patients and families. The platform helps users, understand their condition, access information, stay organised, prepare for emergencies, participate in research, and take a more active role in their healthcare journey.
Duchenne UK Connect will also bring together the clinical trial finder and recruitment database in one place. Interest can be registered and UK-based trials easily search, making access to research fairer and simpler for everyone.
We know how important reliable information is. That’s why the platform gives access to the latest UK clinical care guidelines and educational resources, reviewed by experts. Everything is easy to find and available on mobile, tablet, or desktop and can be used offline too.
The Care section is based on the work of Duchenne Care UK and provides practical, evidence-based guidance for families. The content reflects international best practice adapted for UK healthcare settings, includes accessible patient and family resources, and helps patients and families understand what good care looks like and advocate for themselves.
One of the most important features is the In Case of Emergency (ICE) tool. If urgent care is needed, critical health details and expert treatment guidance can be quickly shared with healthcare professionals. This means faster, safer treatment when it matters most.
Through informed consent, participants can choose to share information that helps match patients to clinical trials, improve understanding of the Duchenne patient experience, support development of future treatments, and advance Duchenne research more quickly and effectively.
How will it work?
Anyone in the United Kingdom with Duchenne can join. If you are not an adult*, a parent or guardian needs to sign up and create your profile.
1
Read and sign the online consent form on the website or on the app.
2
Create an account by filling out your information.
3
Add a profile for each person with Duchenne, if you have more than one child with Duchenne, you can create a separate profile for each of them.
4
Complete surveys and track your symptoms.
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FAQs
Duchenne UK Connect collects personal information, such as your name and contact information, as well as health information. Your health information is collected through surveys and other activities within the platform/app, such as uploading a copy of your genetic testing results.
Yes, Duchenne UK Connect is hosted on a secure data platform that complies with important research and privacy regulations, including the GDPR, for protecting participant data in research. Duchenne UK is deeply committed to protecting your data and has taken all reasonable steps to reduce this risk.
An informed consent form explains what is involved in a research study, including its goals and the possible benefits and risks to you. It ensures that you fully understand and voluntarily agree to take part in research. Duchenne UK Connect is a research project, and all people who are eligible to join will be asked to review and voluntarily sign the informed consent form to take part.
If you are signing up a child for Duchenne UK Connect and they are old enough to understand, you should talk to them about joining and make sure they are comfortable taking part. If your child is under 16, you are encouraged to discuss it with them and you can show them the assent form that is written for children and young people.
Contact us
If you are interested in working with us, would like to request data, or have any questions, please contact us at duchenneukconnect@duchenneuk.org.
