Data Protection and Privacy
We are collecting information through this survey to better understand people's experiences of muscle wasting conditions and to inform our research, services, campaigns and support activities.
Your survey responses are anonymous. We do not ask for your name, and any information you provide in response to the survey questions will be analysed and reported in a way that does not identify you.
At the end of the survey, you may choose to provide your personal data for one or all of the following purposes:
- to be entered into a prize draw to win one of ten recognition vouchers worth £50.
- to be contacted about taking part in a follow-up online interview; and/or
- to receive our e-newsletter and updates about our work.
Providing your name, email address and postcode is entirely optional. If you choose to provide this personal information, it will be stored separately from your survey responses and will not be used to identify your survey answers.
If you ask to be contacted about a follow-up interview, we will use your email address only for the purpose of contacting you about interview participation and related arrangements. Prior to contacting you about the interview we would use your condition and demographic survey answers to assess whether you are an appropriate fit for our interview requirements; this information will only be stored against your email address during the interview management phase of the project. Providing your email address does not oblige you to take part.
If you choose to subscribe to our e-newsletter, we will use your email address to send you news, information and updates about our work. We will only send these communications where you have actively opted in. You can unsubscribe at any time by using the unsubscribe link in our emails or by contacting us.
We process personal data in accordance with the UK General Data Protection Regulation (UK GDPR), the Data Protection Act 2018 and the Privacy and Electronic Communications Regulations (PECR). The lawful basis for collecting and analysing anonymous survey responses is our legitimate interests in understanding and representing the experiences of people affected by muscle wasting and weakening conditions. Where you provide an email address for interview contact or to receive our e-newsletter, we rely on your consent, which you may withdraw at any time.
We will retain email addresses only for as long as necessary for the purposes described above and in accordance with our retention policy.
For more information about how we use personal information, your rights, and how to contact us, please see our Privacy Policy:
Muscular Dystrophy UK Privacy Policy