Duchenne UKConnect
Duchenne UK Connect is a health platform and App designed to empower people affected by Duchenne, while accelerating research, improving care and supporting the development of future treatments.
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.
The App brings together everything patients need, in one easy to use platform. This includes the best guidance on care; what to do in an emergency; how to find out about research and clinical trial opportunities and the ability to register to take part in clinical trials.
The platform has different modules. You can choose which parts you want to use and will be asked for consent where this is required.
Duchenne UK Connect is a first-of-its-kind App that has been developed specifically for the Duchenne Community in the UK.
Families often tell us that managing all this while staying informed and connected can be stressful. That’s why we created Duchenne UK Connect.
Duchenne UK Connect can be accessed on a phone, tablet or computer. It is designed to help people with Duchenne and their families keep important information in one place, stay organised, prepare for emergencies, find reliable care information and learn about and participate in research.
Built with the community, for the community
Duchenne UK Connect is developed and funded by Duchenne UK and run in collaboration with our partners at the John Walton Muscular Dystrophy Research Centre at Newcastle University.
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.
4
Complete surveys and track your symptoms.
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.
Duchenne UK Connect Booklets
These booklets will help you understand the different parts of Duchenne UK Connect and how they can benefit you. They explain how the platform works, the information you can choose to share, how your data is protected, and how Duchenne UK Connect supports research, care and future treatments.
Frequently Asked Questions
Have questions about Duchenne UK Connect? Browse our frequently asked questions below to learn more about registering, updating your details, and how your information is managed.
General questions
Duchenne UK Connect is a secure online platform and App for people living with Duchenne muscular dystrophy, their families, carers and legal guardians.
The platform is designed to bring together information that can help improve understanding of Duchenne, support research, improve care, and make it easier for people affected by Duchenne to take part in relevant opportunities, including research and clinical trials.
Duchenne UK Connect includes different parts, such as the Registry module, Research module and Care module. You can choose which parts (also called modules) you want to take part in, and you will be asked for separate consent before joining each module.
Duchenne UK Connect has two main aims:
- To help improve understanding of Duchenne and the needs of people living with Duchenne.
- To support research, clinical trial recruitment, care improvement and better services for the Duchenne community.
By sharing information through Duchenne UK Connect, you can help build a clearer picture of how Duchenne affects people over time and what support, care and research opportunities are needed.
Duchenne UK Connect helps by allowing people with Duchenne, or their parent, carer or legal guardian, to share information about diagnosis, symptoms, daily life, care, treatments and experiences.
This information can help Duchenne UK and approved researchers better understand the needs of the Duchenne community. It may also help identify patterns in care, support service planning, and make it easier to connect eligible participants with research or clinical trial opportunities.
The information shared through Duchenne UK Connect may be used to support approved research into Duchenne Researchers may apply to access data with personal details that can identify a person removed, which means information that directly identifies you, such as your name or contact details, is removed before it is shared. Where you have joined the Research module and given consent to be contacted about clinical trials, as part of the Duchenne Hub UK, identifiable information may be used or shared where necessary to assess your potential eligibility, contact you about relevant opportunities, or connect you with the relevant clinical trial or research team. This will only happen in line with your consent choices and the information provided to you.
The Research module may also help with clinical trial recruitment by enabling eligible participants to hear about relevant trials or research studies via the clinical trial finder.
Duchenne research, care and treatment development depend on good-quality information from the people and families affected by Duchenne.
By taking part in Duchenne UK Connect, you can help create a stronger UK-wide picture of Duchenne, including how it affects health, daily life, care and quality of life. This can support better research, better trial design, better care planning and stronger advocacy for the Duchenne community.
A traditional registry usually collects health and diagnosis information for research purposes.
Duchenne UK Connect is broader. It is a platform with different parts (also called modules), including Registry, Research for clinical trials and Care. This means it can support a range of purposes, including collecting patient-reported information, helping with research and clinical trial opportunities, and improving understanding of care experiences and service needs. You can choose which parts of Duchenne UK Connect you want to take part in.
Duchenne UK Connect is for people who live in the UK with a confirmed diagnosis of Duchenne muscular dystrophy.
People aged 16 or over can join and consent for themselves if they have the capacity to do so. This means they can understand the information and make their own decision. They can also choose to authorise another adult (to a parent, carer or legal guardian) to manage their account on their behalf.
For children, a parent, carer or legal guardian may manage their profile where appropriate.
You will be given information about each part of Duchenne UK Connect before deciding whether to take part.
When you sign up to Duchenne UK Connect, you will be guided through a simple process:
- Create an account.
- Verify your email address.
- Create a profile for yourself or the person you care for.
- Read the relevant information and privacy notices.
- Choose which part or parts you want to join.
- Give consent for each module you decide to take part in.
Youdo not have to join every module. You can choose what is right for you.
Yes. You only need to create your account once. To help keep information accurate and useful, you may be asked from time to time to review and update your details, particularly if there have been changes to health, care or contact information.
Most people can create an account and complete the initial registration in around 10-15 minutes. If you choose to complete additional questionnaires or upload documents, it may take a little longer.
If you have forgotten your password, select "Forgot Password" on the login page and follow the instructions to reset it. If you continue to have problems accessing your account, please contact the Duchenne UK Connect team for support.
We encourage you to update your information whenever something changes, such as your contact details, treatment or care arrangements. If you are taking part in the Registry, you will usually be invited to review and update your information every six months.
Informed consent means that you are given clear information about what taking part involves before deciding whether to join.
Foreach Duchenne UK Connect module, you will be told what information will be collected, how it will be used, who may access it, what the possible benefits and risks are, and what choices you have.
Taking part is voluntary. You should only consent if you understand the information and are happy to take part.
Yes. Duchenne UK Connect has separate modules, and each module has its own consent.
Creating a Duchenne UK Connect account does not automatically mean that you have joined every module. You will be asked to give specific consent before taking part in a module such as the Registry module, Research module or Care module.
This depends on which module or modules you choose to join.
In general, you may agree that Duchenne UK Connect can collect and use information you provide for the purposes explained in the relevant module information sheet and consent form. This may include using your information to support research, improve understanding of Duchenne, improve care and services, or help identify suitable research or clinical trial opportunities.
You will be told clearly what you are agreeing to before you consent.
You may be asked to complete online questionnaires or surveys about Duchenne. These may cover topics such as diagnosis, health, mobility, daily living, treatments, care experiences, quality of life and research interests.
You can choose which information you provide. Some questions may be optional, and you do not need to complete everything in one sitting.
Over time, you may be invited to update your information so that Duchenne UK Connect can build a better picture of how Duchenne changes over time.
You can withdraw from a module or from Duchenne UK Connect at any time.
If you withdraw, no new information will be collected for that module. Depending on the consent you gave and the choices available at withdrawal, Duchenne UK Connect may continue to use information already provided in anonymised form, meaning it can no longer be linked to you, for a research project but will delete information where possible if that is your preference.
Information that has already been used in completed research or shared with personal details that can identify a person removed may not always be possible to remove.
No. There is no cost to join Duchenne UK Connect.
Duchenne UK Connect is intended for people with a confirmed diagnosis of Duchenne muscular dystrophy (for example, a clinic letter or genetic test report)
If you are unsure whether you or the person you care for is eligible, please contact the Duchenne UK Connect team before signing up.
Questions about your data and personal information
Duchenne UK Connect will collect information, such as name, email address, login details and contact preferences.
Depending on the module you join, it may also collect information about diagnosis, symptoms, mobility, daily living, treatments, care, quality of life, research interests and clinical trial preferences.
No. Many questions are optional and you can choose what information you provide. However, some questions are required so that the platform can work properly. Duchenne UK Connect will make it clear which questions are required and which are optional.
Your personal information will be used to create and manage your Duchenne UK Connect account, communicate with you about the platform, manage your consent choices, provide support, and operate the modules you choose to join.
Your personal information will not be shared with researchers in a way that directly identifies you unless you have been told about this and have given appropriate consent.
Your health and care information may be used to improve understanding of Duchenne ,support approved research, improve care and services, and help identify suitable research or clinical trial opportunities.
Where information is shared for research, it will usually be have personal details that can identify a person removed. This means direct identifiers such as your name and contact details are removed before the information is made available to approved researchers.
Researchers must submit a request explaining their project, what data they need and how they will use it.
Requests are reviewed through our review process, which includes the Steering Committee and Data Access Committee. Data is only shared if the request is approved and appropriate safeguards are in place. Researchers must use the data only for the approved purpose.
More information is provided in the Participant Information Leaflets.
Approved researchers may include researchers from universities, hospitals, charities, pharmaceutical companies, biotechnology companies or other organisations involved in Duchenne research, treatment development, care improvement or service planning.
Accessis not automatic. Requests must be reviewed and approved before data is shared.
Normally, no. Researchers will usually receive at a where the personal details that can identify a person have been removed. This means information that directly identifies you, such as your name and contact details, is removed.
Only authorised members of the Duchenne UK Connect team or approved platform support staff will be able to access identifiable information where needed to operate the platform, provide support, manage consent, or meet legal and governance requirements.
In some cases, Duchenne UK Connect data may be linked with other health or research records where this is explained in the relevant module information and consent materials, and where appropriate safeguards are in place.
Any linkage would be carried out only where there is a clear purpose and appropriate approval.
Questions about the technology and accessibility
At launch, Duchenne UK Connect will be available in English only.
If you need information in another language or need help understanding the questions, please contact the Duchenne UK Connect team.
Yes. A parent, carer, legal guardian or trusted person may help you complete the surveys where appropriate.
If you are an adult, you can also choose someone to complete the surveys and manage your account for you.
If someone is completing information on behalf of a person with Duchenne, they should answer as accurately as possible and, where appropriate, and involve the person with Duchenne in the answers.
If you are unsure what a question means, you can contact the Duchenne UK Connect team for support. You do not need to guess. If a question is optional, you may also choose not to answer it.
Yes, you will be able to save your progress and return later. You do not need to complete all surveys in one session.
Yes. Duchenne UK Connect is designed to collect information over time. You will be able to update information in your profile and complete new surveys when they become available. You can also change your answers in already completed surveys.
Aparent, carer or legal guardian can manage a profile for more than one care for, where appropriate.
Each person with Duchenne should have their own profile so that their information is kept separate and accurate.
You will be able to give a trusted person permission to help manage your profile.
This could be a parent, partner, carer, family member or other trusted person. You should only give access to someone you trust.
Questions about privacy and security
Duchenne UK Connect takes data protection and security seriously.
The platform uses technical and organisational measures designed to protect your information from unauthorised access, loss or misuse. Access to identifiable information is restricted to authorised people who need it for their role.
Duchenne UK Connect data is hosted in the UK using secure cloud infrastructure.
Further details about hosting and data storage are set out in the Duchenne UK Connect privacy notice.
Duchenne UK Connect uses encryption to protect data during transmission and storage. This means that information is protected when it is sent between your device and the platform, and when it is stored in the platform’s systems.
Duchenne UK is responsible for the Duchenne UK Connect platform.
For some parts or activities, Duchenne UK may work with partner organisations. For example, some research activities may involve joint responsibility with research partners. Where this applies, you will be told in the relevant information sheet or privacy notice.
Your identifiable information, such as your name and contact details, will not be shared with researchers or pharmaceutical companies unless you have been clearly informed and have given your permission.
Where data is shared for research, it will usually be have personal details that can identify a person removed. If any activity requires identifiable information to be shared, this will be explained clearly and will only happen where there is an appropriate lawful basis, appropriate safeguards and consent in place.
De-identified data is information where direct identifiers, such as your name, email address, address or phone number, have been removed.
However, because Duchenne is rare, a combination of details, such as age, location, genetic information or medical history, could potentially identify someone. We therefore treat de-identified data carefully and apply strict safeguards.
Some data may be anonymised, meaning it can no longer reasonably be linked back to you.
However, not all data in Duchenne UK Connect will be anonymous, because the platform needs to manage accounts, consent, contact details and profiles. The privacy notice will explain how different types of data are handled.
Duchenne UK Connect uses access controls so that only authorised people can access the information they need. The platform will also use security measures such as encryption, secure hosting, monitoring, backups and role-based access.
Users should also protect their own account by using a strong password and keeping login details private.
If you think someone else has accessed your account or your information may not be secure, contact the Duchenne UK Connect team (duchenneukconnect@duchenneuk.org) as soon as possible.
You should also change your password if you are able to do so in your Duchenne UK Connect account setting .
Questions about using Duchenne UK Connect
Duchenne UK Connect includes:
- Registry module: collects information about Duchenne, diagnosis, symptoms, treatments, daily life and disease progression.
- Research module: helps support research participation and clinical trial recruitment.
- Care module: collects information about care experiences, service use, support needs, what you might need in an emergency and quality of life.
No. You can choose which parts you want to join.
Each module has its own information and consent process. You can take part in one module without taking part in all of them.
Yes. You will be able to withdraw from one module while remaining in another.
For example, you may decide to stop taking part in the Research module but continue with the Registry module or Care module.
If you join the Research module and give the relevant consent, Duchenne UK Connect may contact you about research studies or clinical trials that might be relevant.
Being contacted does not mean you are automatically eligible or required to take part. You can decide whether you want to find out more.
No. Joining Duchenne UK Connect does not guarantee access to any clinical trial or treatment.
Clinical trial eligibility is decided by the trial sponsor and research team based on the specific criteria for that trial.
Yes. Your contact preferences and consent choices will allow you to decide whether you want to be contacted about research opportunities.
You can update your preferences or withdraw consent where applicable.
No. Duchenne UK Connect is not a medical advice service.
The platform will collect information about Duchenne and care, but it does not replace advice from your doctor, specialist neuromuscular team or other healthcare professionals.
If you have questions about your health or treatment, please speak to your clinical team.
Questions about using Duchenne UK Connect if you are outside the UK
Duchenne UK Connect is intended for people with Duchenne in the UK.
If you live outside the UK, please contact the Duchenne UK Connect team (duchenneukconnect@duchenneuk.org) for information about other resources that may be of interest and benefit to you.
Duchenne UK Connect must comply with legal, ethical, research governance and data protection requirements.
These requirements can differ between countries. For this reason, eligibility is currently limited to the UK or to people who meet specific criteria.
If you cannot join Duchenne UK Connect, you can also contact Duchenne UK to ask whether they can signpost you to other relevant support or research resources. You can also visit the Duchenne Care UK website to still access their clinical care recommendations and Family Guides. You can also find out more about clinical trials in the UK at the Duchenne Hub UK website.
Questions about what changes when a child with Duchenne becomes an adult
In the UK, a person is generally treated as an adult from age 16.
This matters because an adult with capacity can usually make their own decisions about whether to take part in research or continue using Duchenne UK Connect.
When a young person turns 16, they may need to take control of their own Duchenne UK Connect profile and make their own consent choices, where they have capacity todo so.
Thismay include deciding whether they want to continue taking part in one or more parts.
The transition happens because consent given by a parent or legal guardian when someone is a child may no longer be appropriate once that person becomes an adult.
Duchenne UK Connect wants to make sure that adults with Duchenne are able to make their own choices about their information and participation wherever possible.
Before the young person turns 16, parents or legal guardians should check that the young person’s profile information is accurate, including their contact details where appropriate.
It is also helpful to talk to the young person about Duchenne UK Connect, what information has been provided, and what choices they may need to make when they become an adult.
If the young person chooses to continue taking part, their existing information will remain in Duchenne UK Connect and they can take control of their own profile. They may also complete an Account Access Authorisation Form to allow a caregiver, legal guardian or parent to continue managing the account on their behalf if they wish.
If they choose to withdraw, the handling of their existing data will depend on the withdrawal options they choose and the consent previously given. Some data will be deleted if requested, while other data may continue to be used in a form that has personal details that can identify a person removed if it has already been used or shared for approved purposes.
Only if the adult with Duchenne gives permission, where they have capacity to do so.
An adult may choose to allow a parent, carer or trusted person to help manage their profile. Without that permission, the parent or legal guardian will no longer be able to access or edit the profile.
If no action is taken, access to the profile will be limited until the adult with Duchenne confirms their choices.
The Duchenne UK Connect team will need to verify the person’s identity and consent preferences before allowing further updates to the profile.
No. A young person needs to reach adulthood (age 16 in this case) before they can give adult consent for themselves.
However, parents and legal guardians can prepare by making sure contact details are up to date and by discussing the transition with the young person in advance.
If a person aged 16 or over is unable to make decisions about their Duchenne UK Connect profile, a parent, carer or authorised representative may be able to manage the profile on their behalf.
We will ask for written evidence of a mental capacity assessment confirming that the person lacks capacity to make this specific decision.
You can ask a healthcare or social-care professional involved in the person’s care, such as their GP, consultant, psychologist or social worker, to carry out or provide a written mental capacity assessment. The assessment should relate specifically to the person’s ability to decide whether to manage their Duchenne UK Connect profile and provide the required consent.
If formal legal authority is already in place, such as a Court of Protection deputyship order or applicable registered Lasting Power of Attorney, you can provide this instead.
If you are unsure what evidence to provide, please contact us before completing registration.
Questions and supporting and finding out more about Duchenne UK Connect
Yes. You can support Duchenne UK Connect by sharing feedback, joining engagement activities, helping improve patient materials, contributing to advisory groups, or helping raise awareness in the Duchenne community.
Pleasecontact the Duchenne UK Connect team if you would like to be involved.
Please contact the Duchenne UK Connect team at: duchenneukconnect@duchenneuk.org, if your question relates to clinical trials or expression of interest in participation in clinical trials please contact the Duchenne UK Hub team at dmdhub@newcastle.ac.uk
The team will be happy to help.
Contact us
If you're interested in working with us, would like to request data, or have any questions about Duchenne UK Connect, contact us at duchenneukconnect@duchenneuk.org.
Need help getting started with Duchenne UK Connect or making the most of the platform? Book a free 30-minute online meeting with a member of our team to learn how to use Duchenne UK Connect, explore its features, and get answers to any questions you may have.
