Who are we?  

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We are REFUEL-MS, based at King’s College London. REFUEL-MS is co-funded by the NIHR (Programme Grant for Applied Research (PGfAR) funding stream (NIHR unique award identifier: NIHR203290)) and the UK MS Society.   

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Further information about REFUEL-MS can be found at www.REFUEL-MS.com.  

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If you need to contact us about this privacy notice, please write to refuel-ms.trial@kcl.ac.uk.  

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King’s College London and Guy’s and St Thomas’ NHS Trust (GSTT) are joint data controllers. This means we are jointly responsible for handling personally identifiable data. The information sheet you are given will specify who the principal investigator of the study is.  

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The University and the Trust take their obligations under the UK GDPR very seriously and will always ensure personal data is collected, handled, stored, and shared in a safe and secure manner. The University’s Data Protection Policy can be accessed here:  https://www.kcl.ac.uk/policyhub 

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For more information, including your legal rights and what to do if you have a concern regarding the handling of your personal data please see the KCL research privacy notice here: https://www.kcl.ac.uk/research/support/rgei/research-ethics/kings-college-london-statement-on-use-of-personal-data-in-research 

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The University’s core privacy notice can be accessed here: https://www.kcl.ac.uk/terms/privacy 

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Guy’s and St Thomas’ privacy notice can be found here: www.guysandstthomas.nhs.uk/research/patients/use-of-data.aspx  

 

Why do we process your personal information?  

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We process your personal information in order to register you onto the REFUEL-MS app and programme of research. This enables you to use the app and be given support from a healthcare professional throughout the intervention. We further use your data to contact you for study-related processes such as questionnaire completion, arranging appointments and interviews and to eventually evaluate the effectiveness of the intervention.  

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Any data you provide will be processed in accordance with UK data protection law including the UK General Data Protection Regulation (UK GDPR) and the Data Protection Act 2018. 

 

What is our ‘legal basis for processing’? 

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The legal basis for processing this personal data is:  

 

• Public task - the processing is necessary for the organisation to perform a task in the public interest or for the organisation’s official functions, and the task or function has a clear basis in law. Data protection legislation allows us to use your personal information in this way because it is required for our public purpose as a teaching and research institution. 

 

If you wish to withdraw from the study you can do so at any time by contacting refuel-ms.trial@kcl.ac.uk.  

 

Do you have to provide your personal information and what are the consequences of not doing so? 

You must provide the personal information requested in the registration process. If you do not, you will not be able to complete enrolment onto the REFUEL-MS app and therefore will not be able to use the app. This data is integral to be involved with the REFUEL-MS programme. 

 

How long do we keep your information for?  

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We will keep personal data until the end of the study you are involved in. If you consented to be contacted for future studies and opportunities, we will keep your personal data until the end of the research programme (May 2028). Your anonymised research data will be kept for 7 years after completion of the study you are involved in.  

 

Do we share your information with other organisations? 

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You will need to enter your personal information including your name, telephone number, date of birth, gender, MS type and email address in order for you to register on the REFUEL-MS app. This will therefore be shared with Avegen, the app developers who are contracted to build and host the programme. 

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Avegen’s privacy policy can be accessed here: Avegen Privacy Policy 

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Your data will be processed by KCL University researchers, GSTT and Avegen only, so will stay inside the UK/EU and be protected by the requirements of the UK GDPR.  

 

What are your rights and who can you contact if you have a concern? 

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You have the right to be informed of the following: 

• What data we collect from you. 

• How we will ensure the confidentiality of your data. 

• How long we will keep your data for, and whether it will be shared with anyone else. 

 

Under UK data protection law, you have the right of access to any information we hold about you. You can ask for it to be corrected, erased and object to how it is processed. However, this might be restricted in some circumstances. Depending on the REFUEL-MS study you are involved in, the withdrawal procedure will be outlined in the participant information sheet.  

 

To find out more about how the university deals with your personal information, including your rights and who to contact if you have a concern, please see the university’s core privacy notice at https://www.kcl.ac.uk/terms/privacy.aspx .  

 

You can also contact the Data Protection Officer at GSTT: Nick Murphy-O’Kane DPO@gstt.nhs.uk  

 

If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO)