Privacy Policy

Updated 22nd December 2022

Thank you for visiting the Dementia Researcher website at https://www.Dementia Researcher.nihr.ac.uk/ and related subdomains (the “Website”) and / or using any of Dementia Researcher services (including Dementia Researcher WhatsApp Group), platforms, products and / or services (together, the “Dementia Researcher Services”).

For the purposes of European, UK and Swiss data protection laws, including the General Data Protection Regulation 2016/69 (“GDPR”), Dementia Researcher, owned / managed by University College London, (“Dementia Researcher””, “us”, “we” or “our”) they act as the data controller responsible for collecting and processing your personal information pursuant to this Privacy Policy (the “Policy”).

Through this Policy we aim to describe what type of personal information Dementia Researcher collects and processes, how we collect your personal information and crucially, why we collect it. The information contained in this Policy is directed to users of the Dementia Researcher Services (“you” or “your“).

It is important for you to understand that by using the Dementia Researcher Services, you accept the practices described in this Policy. Consequently, if you do not agree to the terms of this Policy, we ask you to not use the Dementia Researcher Services. 

  1. Personal Information We Collect

To provide, maintain and improve the Dementia Researcher Services and your online experience, we collect some information that is personal to you. This information is obtained from various sources as described below.

 Personal Information You Provide to Us

When you sign-up to use the Dementia Researcher Services and create an account, we ask you to provide your email address, a password for your account and other information necessary to create and maintain your account. You can choose not to provide certain information, but in that case, you might not be able to take advantage of certain features of the Dementia Researcher Services.

Categories of personal information – We may obtain from you the following categories of personal information:

  • your Dementia Researcher user profile information (such as first and last name, username, e-mail address or telephone number).
  • if you signed-in using your Twitter, Facebook, or Google account: profile information (such as name, username, email, profile picture),
  • your Twitter, Facebook, or Instagram social handles.
  • your Profile picture.
  • your user bio.
  • your account and privacy settings.

Purposes of the processing – We collect this information in order to:

  • Provide, maintain, and improve the Dementia Researcher Services.
  • Give you access to your account and enable you to update your user profile.
  • Communicate with you in relation to the Dementia Researcher Services and your account.
  • Send you marketing emails, alerts and notifications about your feed activities and other promotional materials that may be of interest to you.
  • Evaluate, test, and develop new Dementia Researcher features, technologies, products and/or services.
  • Fulfil any support request you may have and answer your questions.
  • Conduct surveys and research in relation to your use of the Dementia Researcher Services.
  • Understand, diagnose, troubleshoot, and fix issues with the Dementia Researcher Services.
  • Prevent, detect, or block fraudulent behaviour and ensure network security of the Dementia Researcher Services.
  • Comply with any legal obligation Dementia Researcher may have.

Legal basis

 The processing of your personal information is necessary for the performance of our relationship with you. In some cases, the processing of your personal information is based on our legitimate interest, for example if we want to evaluate, test, and develop new Dementia Researcher products and/or features, or where we are pursuing a legitimate service provision purpose. When balancing interests, we have concluded that the processing of your personal information will have minimal impact to your privacy and that it is necessary to continue to provide you with the Dementia Researcher Services. You may still access parts of the service without the need to register or provide any personal information.

Automatic Data Collection

 We automatically collect and store certain information about your use of the Dementia Researcher Services, including information about your interaction with content, products and features available through the Dementia Researcher Services. This information is collected via cookies, web beacons (also known as pixels or pixel tags) or other similar technologies on our website or the Dementia Researcher Services which collect certain information when your web browser or device accesses the Dementia Researcher Services. For more information about cookies, including which cookies we use and how to opt-out or manage your cookie settings, see Section 5 below “Information About Cookies”.

 Categories of personal information

 We may automatically collect the following categories of personal information when you visit our website and use the Dementia Researcher Services:

  • your device types.
  • your Internet Protocol (IP) address.
  • your browser types.
  • your Dementia Researcher user ID.
  • your user agent information.
  • your device settings.
  • your language and other preferences.
  • your referral information (i.e., a URL link that tracks how you have landed on the Website).
  • the date/time stamp when you access the Dementia Researcher Services.
  • information regarding your usage or interaction with the Dementia Researcher Services, such as search history, podcasts, creators, or users you follow, podcasts or episodes you have marked as being of interest to you, ratings, comments, reviews, or likes you have submitted, podcasts, creators, guests, or credits you have submitted.

Purposes of the processing – We collect this information in order to:

  • Provide, maintain, and improve the Dementia Researcher Services.
  • Recognizing when you sign-in to the Dementia Researcher Services.
  • Understand how you interact with the Dementia Researcher Services and improve the usability and effectiveness of the Dementia Researcher Services.
  • Provide you with a personalized user experience, including making recommendations about podcasts, creators or other Dementia Researcher users that might be of interest to you.
  • Determine and remember your preferences based on your location, such as your language or privacy preferences.
  • Analyse and measure the performance of the Dementia Researcher Services, including by conducting analytics, research, and diagnostics.
  • Display advertisements regarding the Dementia Researcher Services to unaffiliated web domains or applications, such as Facebook or Google.
  • Obtain audience demographics from third-party service providers.
  • Understand, diagnose, troubleshoot, and fix issues with the Dementia Researcher Services.
  • Prevent, detect, or block fraudulent behaviour and ensure network security of Dementia Researcher Services.
  • Comply with any legal obligation Dementia Researcher may have.

Legal basis

 The processing of your personal information is based on our legitimate interest. When balancing interests, we have concluded that the processing will have minimal impact to your privacy and that it is necessary to continue to provide you with the Dementia Researcher Services. If your personal information is collected via cookie or other similar technologies, the processing of your personal information is based on your consent. For more information on how to opt-out or manage your cookie settings, please see Section 5 “Information About Cookies” below.

 Categories of personal information

 We may obtain from other sources the following categories of personal information:

  • Contact information; including name, job title, email address and phone number
  • Social media links.

Purposes of the processing – We collect this information in order to:

  • Provide, maintain, and improve the Dementia Researcher Pro Services.
  • Upload professional contacts to Dementia Researcher / Community pages

Legal basis

The processing of your personal information is based on our legitimate interest. When balancing interests, we have concluded that the processing will have minimal impact to your privacy and that it is necessary to continue to provide you with the Dementia Researcher Services.

 User Content and Public Posting Information

When using the Dementia Researcher Services, you may choose to post or upload personal information about yourself such as name, photo, or other related bio content e.g., place of work, comments relating to you or an identified or identifiable individual (“User Content”) to publicly available pages of the Dementia Researcher Services. It is important for you to understand that User Content you post or upload in the Dementia Researcher Services will be public information and can be seen by anyone. By posting or uploading User Content information in the Dementia Researcher Services, you hereby acknowledge and agree that you are a data controller with respect to such information and undertake to comply with your GDPR obligations as a data controller. Further, you hereby warrant and represent that you are authorized to upload the User Content in the Dementia Researcher Services.

You acknowledge and agree that anyone may be able to see, access, download or share your User Content to other channels such as Facebook, Twitter, Reddit, as well as via email. For this reason, we recommend that you guard your privacy and anonymity and not post or upload any User Content that you are not comfortable being publicly available. If you are a signed-in Dementia Researcher user, you may choose your privacy settings. 

  1. Sharing Your Personal Information

Dementia Researcher may share your personal information in the following circumstances:

Service provider

We may or share or disclose your personal information with our third-party service providers that perform certain services on our behalf. Such service providers are only allowed to use your personal information in accordance with our instructions and pursuant to a written contract. They are also required to keep your personal information safe. For example, we share your personal data with the following service providers:

  • WP Engine who provides hosting services.
  • Mailchimp / SMPT who provides an email marketing solution.

Information you publicly disclose

Any User Content information you upload or publish to publicly or semi-publicly available pages of the Dementia Researcher Services may be read, collected, and used by others who access such pages. Such information can also be seen, accessed, shared, or downloaded through third party services such as search engines.

Business transfers

If we sell all or part of our business, or make a sale or transfer of assets, or are otherwise involved in a merger or business transfer, we may transfer your personal information to one or more third parties as part of that transaction.

As required by law and similar disclosures

We will share your personal information with a third-party if we are required to do so by law or if we in good faith believe that such action is necessary to comply with a legal obligation under applicable law or a valid legal process. We will also share your personal information where it is necessary for our legitimate interests or those of a third-party and your interests and fundamental rights do not override those interests. Such legitimate interests may include protecting and defending our rights or protecting the safety of any person.

  1. International Data Transfers

Please note that your personal information will remain within the EU.

  1. Data Security and Retention

 Data Security

We are committed to protecting your personal information and have implemented reasonable security measures designed to protect the information we collect or receive from you. We regularly perform security tests and procedures to help protect your personal information from unauthorized access, use or disclosure. If you have any questions about security in the Dementia Researcher Services, you can contact us as set out in the “How to Contact Us” section below.

Data Retention

The period during which we store your personal information varies depending on the purpose for the processing. For example, we store personal information needed to provide you with the Dementia Researcher Services, or to facilitate transactions you have requested, for so long as you are a user of Dementia Researcher. We store your personal information for marketing purposes until you have opted-out of receiving further direct marketing communications in accordance with applicable law. In all other cases, we store your personal information for as long as is needed to fulfil the purposes outlined in this Policy or if required to do so for backups, archiving, prevention of fraud and abuse, compliance with law and regulatory obligations, or when we otherwise believe we have a legitimate reason to do so. If we determine that your personal information is no longer needed for any reason whatsoever, we will take all necessary steps to either anonymize (where permitted by applicable law), delete, or destroy your information. 

  1. Information About Cookies

Cookies are text files containing small amounts of information which are downloaded onto your device (such as your computer, mobile phone, tablet or other similar device) when you visit a website and use its functions or use an app.

We use cookies and similar technologies to collect information about your browsing activities and to distinguish you from other users of our Website. This helps us improve your experience when you browse our website and allows us to understand and improve the functionality of the Dementia Researcher Services. The type of cookies or similar technologies that may be used on our website can be categorized as follows: Strictly Necessary, Performance, Functionality, and Advertising.

Strictly Necessary Cookies

These cookies are necessary for the Dementia Researcher Services and/or Website to function and cannot be switched off in our systems. They are usually set as a response to an action made by you, such as logging-in or managing your privacy settings. Without them you would not be able to use the basic features of the Dementia Researcher Services and/or Website. You can set your browser to block or alert you about these cookies, but some parts of the Dementia Researcher Services and/or Website will then not work.

Performance Cookies

 These cookies are used to count visits and traffic sources so we can measure and improve the performance of the Dementia Researcher Services and/or Website and, more generally, improve your user experience. They help us understand which pages are the most and least popular and analyse how visitors use the Dementia Researcher Services and/or Website. Examples of performance cookies that our website uses include Google Analytics cookies. To see how you can opt-out of Google Analytics cookies, visit: Google Analytics opt Out Link.

Functionality Cookies

These cookies are used to enhance the performance and functionality of the Dementia Researcher Services and/or Website but are non-essential to their use. For example, they allow to remember certain choices you make such as your login details, language, or the region you are in, and to facilitate interaction with our customer support Messenger, if any. If you do not allow these cookies, certain features of the Dementia Researcher Services and/or Website may not function properly.

Managing Your Cookie Preferences

Most web browsers allow you to manage your cookie settings. You can set your browser to block or disable cookies. Different browsers make different controls available to you. If you want to allow, block, or customize your cookie settings in your browser, please visit one of the following links:

If you want to learn more about cookies and similar technologies, which cookies have been set in your web browser and how to manage your cookie settings, visit https://www.allaboutcookies.org/. 

  1. Managing Your Information

If you are a signed-in Dementia Researcher user, we offer you a number of ways to manage the personal information you provide to us, or we collect via automated means on the Dementia Researcher Services:

Modify your account information

We provide you with the ability to modify your account information which you may do through the “My Profile” section of your account or by contacting us as set out in the “How to Contact Us” section below.

Modify your e-marketing preferences

If you wish to unsubscribe from marketing emails, you may follow the unsubscribe instructions contained in the promotional, marketing, or other similar emails you receive. However, we may still send you administrative emails when it is necessary to do so. For instance, if the Dementia Researcher Services are temporarily suspended for maintenance, we may send you an email. You may not opt-out of these administrative communications, which are not promotional in nature.

Cancel accounts – If you would like to request the cancellation or deactivation of your account, please contact us as set out in the “How to Contact Us” section below for assistance. Cancellation or deactivation of your account does not ensure complete or comprehensive removal of the User Content you may have posted or otherwise made publicly available in the Dementia Researcher Services while you were a registered user.

Published User Content or pages

We provide you with the ability to unpublish or modify User Content or pages. 

  1. Your Data Privacy Rights

Rights in the EEA, UK, or Switzerland

If you are located in the EEA, Switzerland, or the UK, you have several rights over your personal data as described below. If you wish to exercise any of the rights mentioned below, please contact us as set out in the “ How to Contact Us” section below.

In the event you submit, or your authorized agent submits on your behalf, a request to exercise any of your data privacy rights, you (and your authorized agent) hereby acknowledges and agrees, under penalty of perjury, that you are (or the authorized agent of) the consumer whose personal information is the subject of the request. We will respond to any data requests within the timeframes required by law, and we may charge a fee to facilitate your request were permitted by law.

Right of access

You have the right, upon request, to be informed of the personal data we collect about you, a copy of which will be provided free of charge. However, we may charge a reasonable fee to comply with requests for further copies of the same information or when a request is manifestly unfounded or excessive, particularly if it is repetitive.

Right to rectification – You have the right to request that we amend or update your personal data where you have identified that it is inaccurate or incomplete. If you are a signed-in Dementia Researcher user, you may exercise this right as set out in the “Managing Your Information” section above. If your biography is published on the ‘Meet the Researchers’ page, you may modify or request removal by emailing dementiaresearcher@ucl.ac.uk

Right to erasure – In some cases, you have the right to request that we delete your personal data. For example, you can request us to delete personal data that we (i) no longer need for the purpose it was collected for, or (ii) process based on your consent and you withdraw your consent. There are situations where Dementia Researcher is unable to delete your data, for example when the data is still necessary to process for the purpose for which it was collected, Dementia Researcher’s interest to continue to process the data overrides your interest in having it deleted, or because we have a legal obligation to keep the data. If you wish to cancel or deactivate your Dementia Researcher account(s), you may exercise this right as set out in the “Managing Your Information” section above.

Right to restrict processing – If you believe that your personal data is inaccurate, that our processing is unlawful, that we no longer need your information for a specific purpose, or if you object to the processing of your personal data pursuant to “ Right to object to processing” section below, you have the right to request that we temporarily or permanently restrict the processing of some or all of your personal data.

Right to data portability – When we are processing your personal data on the legal basis of consent or performance of contract, you have the right to request a copy of your personal data in an electronically retrievable form and the right to use that data in other services.

Right to object to processing – You have a right to object to the processing of your personal data on grounds relating to your particular situation when the processing is based on the legal basis of legitimate interest. You also have the right to object to the processing of your personal data when we are using it for direct marketing purposes.

Right to withdraw consent – When we process your personal data based on your consent, you have the right to withdraw your consent at any time. The withdrawal of consent shall however not affect the lawfulness of processing based on your consent before its withdrawal.

Right to lodge a complaint with the Data Supervisory Authority – If you have any concerns or complaints about Dementia Researcher’s processing of your personal data, you may lodge a complaint with the relevant data supervisory authority in your jurisdiction.

California Privacy Rights

If you are a resident in the State of California, under the California Consumer Privacy Act of 2018 (“CCPA”) you have the following rights:

Right of Access in a Portable Format – You have the right to request that we disclose certain information to you about our collection and use of your personal information over the past 12 months. Once we receive and confirm your verifiable request for such information, we will disclose to you:

  • The personal information we have collected about you.
  • Our business purpose for collecting (or selling, if applicable) that personal information; and
  • If we sold or disclosed your personal information pursuant to this Policy, the personal information categories that each category of recipient may have obtained or purchased, respectively.

The information may be delivered by mail or electronically, and if provided electronically, the information will be delivered in a portable and, to the extent technically feasible, in a readily usable format that allows you to transmit the information to another entity.

You may exercise this right as set out in the “How to Contact Us” section below.

Deletion Request Rights – In certain circumstances, you have the right to request that we delete any of your personal information that we requested from you and retained. If you wish to cancel or deactivate your Dementia Researcher account(s), you may exercise this right as set out in the “Managing Your Information” section above.

Sale of Personal Information – We do not sell your personal information. If we transfer your personal information to another business or third-party in a way that the CCPA would treat as a “sale”, we will make sure that we have implemented appropriate mechanisms to give you the right to opt-out of the sale of your personal information (such as providing a clear, and conspicuous “Do Not Sell My Personal Information” link on our website).

Nevada Privacy Rights

Pursuant to Nevada law, a Nevada consumer (as the term is defined therein), may, at any time, submit a verified request through a designated request address to a business directing the business not to sell certain types of personal information that the business collects about the consumer. Nevada consumers may make a request pursuant to their rights by contacting us at dementiaresearcher@ucl.ac.uk. For clarity purposes, we do not sell or exchange your personal information for monetary consideration to a third party for the third party to license or sell the information to additional persons or parties.

  1. Children’s Privacy

The Dementia Researcher Services are not intended for children under the age of thirteen and Dementia Researcher does not knowingly collect any information from children under 13 years old. If the parent or guardian of a child under 13 believes that the child has provided us with any information, the parent or guardian of that child should contact us at  dementiaresearcher@ucl.ac.uk. if they want this information deleted from our servers. If you are between the ages of 13 and 18, you may only use the Dementia Researcher Services under the direct guidance and supervision of a parent or guardian who has accepted this Policy on your behalf.

  1. Persons with Disabilities

Dementia Researcher strives to ensure that every person has access to information related to the Dementia Researcher Services, including this, Policy. Please contact us at dementiaresearcher@ucl.ac.uk if you would like this Policy provided in an alternative format and we will seek to meet your needs.

  1. Links to Third-Party Websites and Services

The Dementia Researcher Services may contain links to other websites or online services that are not owned or controlled by us. If you click on a third-party link and submit information to that third-party website or service, your information will be handled pursuant to the privacy policies and terms of use of that third-party. We have no control over, and assume no responsibility for the content, activities, privacy, or security practices of any third-party website linked in the Dementia Researcher Services. We encourage you to review the terms and privacy policy of each third-party website and online service that you visit.

  1. Changes to This Policy

We reserve the right to modify or amend the terms of this Policy at any time. When we make material changes to this Policy, we will notify you via a message on our website or the Dementia Researcher Services. Any changes to this Policy will become effective as of the date that appears at the very beginning of this Policy in the section “Effective as of.” Your continued use of the Dementia Researcher Services following the posting of changes will be deemed an acceptance of those changes.

  1. How to Contact Us

If you want to request information about our Policy or exercise any of your data protection rights as expressed above, you can contact us at dementiaresearcher@ucl.ac.uk

Adam Smith

Programme Director – Dementia Researcher

UCL Queen Square Institute of Neurology

Box 81, Queen Square, London, WC1N 3BG


Last updated December 2022

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