Privacy Notice / Cookies Policy


Click HERE to download a printable version of the Privacy Notice.

This privacy notice tells you what to expect when Join Dementia Research collects personal information.  It applies to information we collect about:

  • Visitors to our website 

  • Those who use Join Dementia Research to sign up for account registration with the service

  • Individuals with queries or complaints in relation to data protection, or freedom of information

How do we use your information?

We analyse information to help us identify ways to improve our website and services. We may also use information for other purposes, which are explained to you when this information is collected.

What information do we collect when you use Join Dementia Research?

We collect information indirectly and directly.

When you use the Join Dementia Research website, we use technology to collect information indirectly - such as your internet address. This is commonplace across all internet services to enable the investigation of issues such as malicious use. This information is then kept in our internet access logs.

We collect information directly from you in a number of ways. One way is by using cookies. Cookies are small files of information that save and retrieve information about your visit to our site, such as how you entered our site, how you navigated through the site and what information was of interest to you. This information is collected for a number of reasons, for example, to help develop the website and associated services.

The cookies we use identify you merely as a number. If you are uncomfortable about the use of cookies, you can disable them by changing the settings in the preferences or options menu in your internet browser. However, disabling cookies may affect our ability to provide services to you; if certain cookies are disabled you may not be able to access the service.

See our Cookies statement towards the end of this notice for more information on the cookies we use.

We also collect additional information when you register as a Join Dementia Research volunteer. When we collect this type of information, we will notify you as to why we are asking for information and how this information will be used. It is completely up to you whether you provide it.

Personal data collected

  • Navigation data – how you move around our site and hyperlinks you click upon

  • IP address and the website you came from

  • Personal information (only if you register as a Join Dementia Research volunteer) –  such as your first name, last name, email address, postcode and other personal information

Use of personal data

  • Analytics – Uses navigation data in services provided by the Join Dementia Research platform

  • Personalisation – Uses navigation data and personal information to enable us, and third parties, to tailor the services provided to you

Data sharing

  • We will never share personal information with any third parties without your consent

  • Navigation data is shared with trusted third parties providing analytics

Links to other websites

The social media sites that Join Dementia Research links to are third-party sites and Join Dementia Research does not control the way these sites use your information. If you choose to access these sites using the links provided, the operators of these sites may collect information from you that may be used by them in accordance with their privacy policies, which may differ from ours.

You should read their privacy policies carefully to find out what happens to any information that is collected by these services when you use them.

How long do we hold this information for?

We will hold the information for as long as we are providing you services and for as long as you agree to this.

We will remove all personal information we hold relating to you (if registered with Join Dementia Research) should you ask for this. Once your information is removed from the service, you will not receive further information from us, nor will you be contacted to participate in future research studies.

Will we disclose your information to, or share it with, other organisations?

As a government department, we do not share data with other organisations unless the law permits us to do so. We do not sell individuals’ information. We will share it only with our authorised Data Processors, who must act at all times under the instructions of the Data Controller under the Data Protection Act 1998. Before you submit any information, we will notify you as to why we are asking for specific information and it is up to you whether you wish to provide it.

If you register as a volunteer for Join Dementia Research, then we will only share your personal information with approved researchers, NHS staff, and the Helpdesks registered to use Join Dementia Research. We also share your contact details only with our third party contracted printers who are responsible for sending out newsletters and annual update reminders to those who have registered to use the service.

Your data is kept under secure conditions

We will take appropriate steps to maintain the security of your data on our service. The open nature of the internet means that data may flow over networks without security measures and may be accessed and used by people other than those for whom the data is intended. Our intention is that this should not happen and we will take appropriate measures to ensure that it does not.

The security of the Join Dementia Research website is managed by the National Institute for Health Research Information Systems Function, contracted to the Department of Health. This function has the appropriate technical expertise to protect against unlawful processing and/or accidental loss of information.

Join Dementia Research is hosted on the Google platform, a cloud-based software platform which provides for disaster recovery processes across its servers, which are all located within the European Economic Area (EEA). None of the data contained within Join Dementia Research will go outside the EEA. The Google platform is accredited to ISO 27001 security standards. 

Complaints or queries

Join Dementia Research seeks to meet the highest standards when collecting and processing personal information. For this reason, we take any complaints made about this very seriously and we encourage people to feedback and tell us when they feel that our collection and/or use of personal information is unfair, misleading or inappropriate. Any complaint and/or query should be sent to the Register Manager (contact details below).

If an individual should wish to make a complaint, we create a file containing the details of the complaint. We will only use the personal information we collect to process the complaint and to verify the level of the service we provide.

In cases where the complaint is about an individual, we usually have to disclose the nature of the complaint made. Where the complainant does not wish for their information to be disclosed, we do try to respect this request, however if the complaint results in a disputed disciplinary matter this may not always be realisable.

Complaint files are maintained and kept in line with the Join Dementia Research retention schedule (as explained in the Destruction of Data policy).

You can request access to your personal information

You are entitled to know whether we hold any information about you and, if we do, to have access to that information and request that it be corrected if it is inaccurate.

Any such requests must be made in writing to the Register Manager (contact details below).

How to contact us

Email us:

Or write to:

The Join Dementia Research Manager

c/o NIHR Clinical Research Network Coordinating Centre

Minerva House

5 Montague House

London SE1 9BB


Cookie Policy

Join Dementia Research uses cookies to ensure you get the best experience on the website. If you continue without changing your settings, we will accept this as your consent to receive these cookies. However, if you wish to, you can change your browser settings to block or remove cookies at any time. Go to for information on how to do this.

Cookies information

Cookies are small information files placed on your device, which are used to improve services for you by, for example:

  • enabling the service to recognise your device, so you do not need to give the same information repeatedly

  • recognising when you have already given a username and password, so that you do not need to do so for every subsequent web page you visit

  • measuring how many people are using the services we provide, so we can make them easier and faster to use

  • analysing data, anonymously, to help us understand how people interact with government services

When we provide services, we want to make them easy, useful and reliable. Where services are delivered on the internet, this sometimes involves placing small amounts of information on your computer, mobile phone or whatever device you are using to access the internet. This information is held in cookies. You can learn more about cookies from the guidance on cookies at

Cookies cannot be used to identify you personally.

See below for further details about cookies you may encounter while visiting the Join Dementia Research website. These details include what information is being held, how long you can expect it to be stored, and how your experience of our website will change if you block individual cookies from being sent to your device.

Main cookies in detail

The only cookies used on Join Dementia Research are for anonymous analysis of your visit to the site and for controlling your secure session while using the site, using the Google Analytics service and a Login session cookie respectively. These are first party cookies and are not tracked across multiple sites.

Google Analytics is used for the anonymous tracking of your use of this site. This cookie is used to store information such as when you visited the site and whether you have been to the site before. There is no personally identifiable information contained within this cookie, but it will use your computer's IP address to determine your geographical location.

It measures numbers and volumes of visitors in order to make sure users’ needs are met, and to understand how services we provide could do better. Google Analytics stores information about what pages you visit, how long you are on the site, how you got here and what you click on. We do not collect or store your personal information (e.g. your name or address) so this information cannot be used to identify who you are. We do not allow Google to use or share our analytics data.

Google Analytics cookies expire two years after your last visit to this site.  Full details on the cookies set by Google Analytics are published on the Google website. Google also publishes a browser add-on, to allow you to choose that information about your website visit is not sent to Google Analytics. 

JSESSIONID is a cookie used for controlling and recognising your secure login session, this expires when you log out or leave the site.

How to control and delete cookies

We will not use cookies to collect personally identifiable information about you.

However, if you wish to restrict or block the cookies which are set by our websites, or indeed any other website, you can do this through your browser settings. The ‘Help’ function within your browser should tell you how.

Alternatively, you may wish to visit which contains comprehensive information on how to do this on a wide variety of browsers. You will also find details on how to delete cookies from your machine as well as more general information about cookies.

Please be aware that restricting cookies may impact on the functionality of our website.

If you wish to view your cookie code, just click on a cookie to open it. You will see a short string of text and numbers. The numbers are your identification card, which can only be seen by the server that gave you the cookie.

To opt-out of third-parties collecting any data regarding your interaction on our website, please refer to their websites for further information.


published 18/07/2014