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MND Register

Information | Privacy policy

Privacy policy (last updated 05.09.2017)

The MND Register for England, Wales and Northern Ireland ("MND Register") is a research study funded by the MND Association and led by principal investigators at King's College London and the University of Oxford. For the purposes of the Data Protection Act 1998 (and on and after 25 May 2018, the EU General Data Protection Regulation (Regulation 2016/679)), the data controllers are King’s College London and the University of Oxford (whose full name is The Chancellor Masters and Scholars of the University of Oxford). This policy explains how we use any personal information we collect about you when you visit (the "website"). By visiting this website, you are accepting and consenting to the practices described in this policy. If you access external sites through the links on our website, you should read the privacy policies applying to those sites. We do not accept any responsibility or liability for external sites' privacy policies. We may review our privacy policy from time to time. Any updates to the policy will be placed on this page. Please check back frequently to see any updates or changes to our privacy policy. If you have any questions about our privacy policy, please contact us. Our contact information can be found here: contact page.

We will collect personal and sensitive information when you visit the website and when you enter information as part of the registration process. This includes: first name, surname, date of birth, gender, and post code. We may also collect your NHS number and ethnicity. You may also optionally provide additional information about your MND symptoms through the website. If you choose to receive our newsletter we will collect your email address, but this is stored separately to your clinical information. With regard to each of your visits to the website, we may automatically collect the following technical information:

  • about your computer or other device used to access the website, including the internet protocol (IP) address used to connect to the internet, browser type and version, time zone setting, browser plug-in types and versions, operating system and platform;
  • about your visit, including the full Uniform Resource Locators (URL) clickstream to, through and from the website (including date and time), pages you viewed or searched for, page response times, download errors, length of visits to certain pages, page interaction information (such as scrolling, clicks, and mouse-overs), and methods used to browse away from the page.

The technical information we collect from you is statistical data about our users' access to the website, browsing actions and patterns which does not identify any individual and allows us to ensure that content from the website is presented in the most effective manner for you and your computer or other device.

The information we collect about you is stored securely on the King’s College London and University of Oxford servers. We will use the information that you provide via the website to locate your clinical record that contains information collected by the healthcare professionals who have treated you, in accordance with the permission you have given to allow us to access such information. This will involve contacting the healthcare professional whose details you provided at registration to verify your diagnosis and request more clinical data from your record about your MND. A full copy of the data we collect can be found here link to project dataset.

The information that you have provided via the website and the information contained within your clinical record will then be used by approved MND researchers from King’s College London and the University of Oxford to run statistical analysis and answer research questions about people with MND. Your information will only be analysed as part of a large cohort.

Once your diagnosis has been verified by your healthcare professional, we will not pass your personal data to any other third parties. The MND Register operates as a resource for research. Any information shared with researchers or approved third parties is anonymised and only shared pursuant to data sharing agreements which ensure the integrity of the research and protection of the data. Where an anonymised clinical dataset is provided to a third party, the MND team will determine the output to be provided. We will not share crude data, and incidence and prevalence in an area will always be presented as a range to avoid a single person within an area being identified.

If you choose to receive our newsletter, we will use your email address to contact you about new research studies and with project news. Your email address will be stored separately to your health and other identifiable information. However, we may disclose your personal information if we are under a duty to disclose or share such information in order to comply with any legal obligation, or to protect the rights, property or safety of the MND team or others.

The information we collect about you is stored securely on the King’s College London and University of Oxford servers.

We ensure that there are appropriate technical controls in place to protect your personal details. For example, the information you provide via the website (e.g. name, date of birth, gender, NHS number and postcode) is encrypted by the website when you enter the information. Where we have given you (or where you have chosen) a password which enables you to access certain parts of the website, you are responsible for keeping this password confidential. We ask you not to share a password with anyone.

Unfortunately, the transmission of information via the internet is not completely secure. Although we will do our best to protect your personal data, we cannot guarantee the security of your data transmitted to the website; any transmission is at your own risk. Once we have received your information, we will use strict procedures and security features to try to prevent unauthorised access.

Yes, cookies are used to track your user session when you are logged in. A cookie is a small amount of data, which often includes a unique identifier that is sent to your computer, tablet or mobile phone (referred to here as a "device") browser from a website's computer and is stored on your device's hard drive. Each website can send its own cookie to your browser if your browser's preferences allow it. The cookies used on this website will not store personal sensitive information or information that can be used to identify you and will be protected using SSL encryption.

We do not have any agreements with third parties to collect data about your activity when you use the website. More information about cookies can be found

We will ask for your consent to collect, use and store your information as set out above when you register on the website. If you would like to withdraw from the study, please email and we will remove your identifiable information from the register. We will keep your anonymised information for analysis.

You are entitled to request a copy of the information that we hold about you. Please see our contact page for information about how to contact us. We may charge a small fee for processing your request. You are entitled to ask us to update or correct your information.

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