Duchenne UK Connect Privacy Notice
What this Privacy Policy covers
This Privacy Policy is specific to the personal data collected in Duchenne UK Connect and explains how and why we collect your data and what we do with it. For information about how we process your personal is not collected in Duchenne UK Connect, please read Duchenne UK’s general Privacy Policy by following this link: Privacy Policy
When we refer to ‘you’, ‘your’ or ‘yours’ in this document we mean the person who has DMD. When we refer to ‘carer’ in this document we mean those people who may register and input details on behalf of the person with DMD, such as a parent or guardian.
What is Duchenne UK Connect?
Duchenne UK Connect is a data platform that is designed to collect information about people living with Duchenne muscular dystrophy (DMD) in the UK. Its main purposes are to provide information to people living with DMD and to inform research and understanding of the disease.
Who we are
Duchenne UK Connect is owned and run by Duchenne UK (“DUK”),which is a UK registered charity which raises money to fund and accelerate treatments and a cure for Duchenne Muscular Dystrophy. Our registered charity number in England is: 1147094 and our registered data controller number is ZA546430. For the purposes of applicable data protection laws, DUK is the controller of personal data we process about you.
Please note that for the purposes of the Research Module only, both DUK and Newcastle University act as joint data controllers for personal data within the Research Module.
What is personal data
Personal data is any information which allows us to directly or indirectly identify you as an individual. This includes your name, contact details and any other information which would allow us to identify you.
Under applicable data protection laws, certain personal data which is more sensitive in nature, for example in respect of matters such as your health, ethnic or racial origin, religious beliefs or political opinions, is classified as “special category” personal data.
What personal data do we collect?
Duchenne UK Connect is split into four ‘modules’, which offer different features. These are:
- A Registry module, which collects personal data about you and your health over time. The personal data is collected via several questionnaires which we ask you to update every six (6) months. We use this personal data to build a better clinical understanding of DMD and improve care standards.
- A Care module, which provides information and guidance about standards of care for DMD. We don’t collect any personal data from you in this module.
- A Research module, which provides details about clinical trials for DMD that are happening in the UK. You can register your interest and preferences for taking part in clinical trials by providing your personal data in this module. We and our partners at Newcastle University use this personal data to match you to clinical trials that you may be eligible to take part in.
- An In Case of Emergency module, which allows you to enter specific information about you and your health which can be easily shared with healthcare professionals who need to treat you in an emergency.
Some personal data is shared between modules to avoid you needing to fill in the same information more than once, but this only happens if you choose to use a module.
Depending on which modules you use, we may process the following personal data about you:
- • When you register for an account on Duchenne UK Connect, we may process personal data such as your full name, address, telephone number and email address, date of birth, gender and NHS number. We may hold similar contact information for carers, together with details of their relationship to you.
• If you fill in details in the Registry, Research or In Case of Emergency Modules, we may hold special category personal data about you. This may include:
-Ethnicity
-Health data, including medical records
-Genetic information
Please note that we may need you to share certain personal data with us to provide you with some features of Duchenne UK Connect.
What are our lawful grounds for processing your personal data?
• We will ask your consent to process your personal data to provide certain services, for example taking part in the Registry Module or opting in to be considered for clinical trials under the Research Module.
• We will ask your consent to process your personal data for the purpose of approved research studies
• We process some personal data on the basis that it is in our legitimate interests. For example, we process anonymised data and use such anonymised data about age, ethnicity and address to monitor equal opportunities.
Please see the table below for further information regarding our legal basis for processing your personal data.
How do we use your personal data?
We process your personal data for the following purposes:
We may use your personal data to (What is the legal basis for processing your personal data in this way?):
- Offer you the features and resources that you select to use on Duchenne UK Connect (Your explicit consent)
- Generate anonymised statistics to improve the clinical understanding of DMD (Your explicit consent)
- Inform approved research studies, if you have provided consent for this (Your explicit consent)
- Contact you about clinical trials you may be eligible for, if you have provided consent for this (It is necessary for our legitimateinterests to update your information and keep it up to date, and necessary forcompliance with legal obligations which we are subject to)
- Notify you if we update any of your information held in Duchenne UK Connect, for example if you tell us that you have changed your address (We rely on your consent if you have selected to be updated about newfeatures and resources)
- Remind you to complete or update your information, or to update you on new features or resources, if you select these options in your profile (It is necessary for our legitimate interests to process personal data for the purposes of improving your experience and use of Duchenne UK Connect. However, please note we will not use your special category personal data, suchas health data, for this purpose without your explicit consent.)
How long do we keep your personal data?
We will retain your personal data only for so long as is necessary to achieve the purposes for which the personal data is collected and processed.
In relation to Duchenne UK Connect, it is necessary for us to keep your personal data indefinitely unless you ask us to remove it. This is because we use your personal data to help us build a better understanding of how DMD progresses over time. This is known as a natural history model. An accurate natural history model of a disease is very important, as it helps to measure the effectiveness of treatments and care, and supports clinical research. While there is a clinical registry in the UK, known as the NorthStar, there isn’t a patient reported registry which collects data about quality of life, which is a critical aspect of a natural history model. Because DMD is a rare, progressive disease, we need to collect data from as many patients as possible over the course of their life to have sufficient data to draw meaningful conclusions.
How do we ensure your personal data is kept safe?
• We limit access to your personal data so that only the people who need to see it to provide services to you and maintain the database can do so.
• We maintain records of when data was accessed, updated or changed and regularly audit this to ensure that data is being used in line with our policies and procedures.
• We host Duchenne UK Connect on secure, UK based servers and apply industry standard cyber security measures to protect data held on the platform.
• We have a system of governance for Duchenne UK Connect which includes a data access committee who assess all applications from researchers to access data from the platform. We only approve applications which have been granted ethical approval from a registered UK ethics committee. We don’t approve any applications to access data from Duchenne UK Connect which are for marketing or promotion.
• We use data sharing agreements with third parties with whom we share data which restrict the use of the data to agreed purposes, set limits on how long the data can be accessed or held, and describe how the data should be destroyed when it is no longer needed.
• We only share data with academic researchers and pharmaceutical companies which has first been anonymised (no longer identifiable to an individual) and only where you have provided your prior consent to this.
• We permanently delete your data from Duchenne UK Connect if you ask us to do this.
How and why might your personal data be shared?
Duchenne UK Connect includes different modules, and information may be shared in different ways depending on what is used and what consent is given.
Research module (with Newcastle University)
Duchenne UK works with a team at Newcastle University to provide features in the Research module. If you have provided your prior consent, and you have provided information in the Research Module, the Newcastle University team will have access to personal data in that module. For the purposes of applicable data protection laws, both DUK and Newcastle University act as joint data controllers for personal data within the Research Module.
Registry Module, academic and not-for-profit research
If you have provided consent in the Registry Module for academic and research purposes, anonymised and/or aggregated information may be shared with academic institutions, charities, and other not-for-profit research organisations for approved research studies. This can include participation in research collaborations and programmes such as the Patient Lifestyle and Disease Data Interactium (PaLaDIn). Where relevant and lawful, anonymised and/or aggregated information may also be shared with public bodies that support health and care decision-making, regulation, or statistical research, for example the National Institute for Health and Care Excellence (NICE), the Medicines and Healthcare products Regulatory Agency (MHRA), or the Office for National Statistics (ONS).
Registry Module, industry purposes
If you have provided your consent in the Registry Module for industry purposes, information may be included in anonymised datasets that are shared with companies with a legitimate purpose, for example to support the development of new treatments for Duchenne muscular dystrophy (DMD).
Legal requirements
Sometimes it may be necessary to share personal data where required by law, for example in response to a lawful request from the police, a court, or another competent authority.
Your rights
You have the following rights regarding your personal data that we process:
• Right to be Informed: You have the right to be provided with information about how we use your personal data.
• Right of Access: You have the right to confirm with us whether your personal data is processed, and if it is, to request access to that personal data including the categories of personal data processed, the purpose of the processing and the recipients or categories of recipients. We do have to take into account the interests of others individuals, and if you want to request more than one copy we may charge a fee.
• Withdrawal of Consent: Where we rely on your consent to process your personal data, you can withdraw that consent at anytime. For example, you can change your permissions about what we can do with your data in your Duchenne UK Connect profile.
• Right of Rectification: You the right to rectify inaccurate or incomplete personal data concerning you. In particular, you have the right to have incomplete personal data completed.
• Right of Portability: You may have the right toreceive personal data concerning you, which you have provided to us, in astructured, commonly used and machine-readable format and you may have theright to transmit that data to another entity.
• Right toRestriction of Processing: In limited circumstances, you may have the right to request that werestrict processing of your personal data.
• Right to Erasure: You may have the right to ask us to erase personal data concerning you.*
• Right to Object: Where we process your personal data on the basis of our legitimate interests, under certain circumstances you have the right to object to the processing of your personal data, includingprofiling.*
*Please note that where your data has been anonymised and aggregated into a data set it is no longer identifiable and such data will not be deleted or removed from that data set.
Although you may request deletion of your personal data, sometimes we might have to hold on to your information for a legal reason, and you can ask us to explain this.
We don’t use automated decision-making programs or software.
If you would like to exercise any of these rights, or if you would like to ask us about your data protection and privacy, please contact us at dataprotection@duchenneuk.org or write to us at Duchenne UK,G24, Shepherds Building, Charecroft Way, London, W14 0EE
You also have the right to make a complaint to the competent data protection authority, which for the UK is the Information Commissioner’s Office. The Information Commissioner’s Office can be contacted at ICO or by post at Information Commissioner’s Office, Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF, or telephone by 0303 123 1113.
Changes to our Privacy Policy
DUK may update this Privacy Policy from time to time. Any changes to this Privacy Policy will be posted on this page, and where appropriate, will be notified to you by email. This version of our Privacy Policy was most recently updated in [April] 2026.
How to contact us
If you have any questions about this Privacy Policy or our use of your personal data please do not hesitate to contact us:
- - by email: dataprotection@duchenneuk.org; or
- - by writing to us at: Duchenne UK, Unit G24, Shepherd’s Building, Charecroft Way, Hammersmith, W14 0EE