Learn more about our Privacy Policy below

Welcome to the EPND website! The EPND Consortium partners have made Alzheimer Europe responsible for the maintenance of this website. We want to inform you how we, or our service providers, collect, use, and disclose your information, including personal information, via this website. We advise you to go through the text of this privacy policy before you visit this website. This website is intended for use by residents of the European Economic Area. By providing personal information to us or by using the website, you agree to the terms and conditions of this privacy policy.

Active gathering of personal information

Some areas of the website may ask you to submit personal information (such as your e-mail address) in order for you to benefit from some specified features (such as newsletter subscriptions). The provision of such personal information can be a condition for enjoying some of the specified features of this website.

Passive information collection

As you navigate around the website, certain information can be passively collected (that is, gathered without you actively providing the information), using various technologies. We and our service providers passively collect and use information in a variety of ways, including:

Your IP Address: An Internet Protocol (IP) address is a number that is attributed to a computer by the internet service provider in order to grant access to the internet. Normally, an IP address contains no personal information since it is generally dynamic (it changes each time connection is made with the Internet) and not static. We use IP Addresses for purposes such as calculating website usage levels, helping diagnose server problems, and administering the website.

Using Cookies, including “session cookies” and “persistent cookies”: A cookie is a piece of information sent by a website to a web browser in order to enable the website to remember certain information and preferences of previous users for future use. “Session cookies” are temporary cookies that are deleted as soon as the visitor leaves his web browser or switches off his computer. Session cookies are used to improve browsing on websites and to collect static information. “Persistent cookies” are stored on the hard disc and stay there unless they are deleted. Persistent cookies are used in order to invoke previously provided information (such as passwords), to retrieve which components of the website visitors find the most valuable and to adapt the website to the visitor’s preferences. You can refuse to accept these cookies by following your browser’s instructions; however, if you do not accept them, you may experience some inconvenience in your use of the website. To learn more about cookies, please visit allaboutcookies.org.

Using internet labels: Internet labels, (also known as single-pixel GIFs, clear GIFs, invisible GIFs and 1-by-1 GIFs) are smaller than cookies and provide certain information on the server such as the IP address and the web browser type of the visitor’s computer.

Using Navigation data: Navigation data (log files, server logs and click stream data) are used by the system administrator to improve the content of the website, for market research and in order to provide information to the visitor.

Through your browser: Certain information is collected by most browsers, such as your Media Access Control (MAC) address, computer type (Windows or Macintosh), screen resolution, operating system version, and Internet browser type and version. We may collect similar information, such as your device type and identifier, if you access the Site through a mobile device.

Device Information: We may collect information about your mobile device, such as a unique device identifier.

Information provided to us by another user of our services: You may have received email communication from the EPND informing your that you have been designated as a contact person for a neurodegenerative disease cohort (e.g., as a Principal Investigator/PI or a secondary contact point). If you did not provide us with your contact information, we may have obtained this information from another user of our website and its associated services. If you believe this was done in error, or have any questions regarding how we use your personal data, please contact angela.bradshaw@alzheimer-europe.org

How we use and disclose information

We may use information from and about you:

  • To respond to your inquiries and fulfil your requests, such as sending you newsletters or e-mail alerts
  • To send you important information regarding our relationship with you or regarding the website, changes to our terms, conditions, and policies and/or other administrative information
  • For IT purposes, such as enhancing our website and identifying website usage trends

We may disclose information collected through the website:

  • To the EPND Consortium members, for the purposes described in this Privacy Policy
  • To our service providers who provide services such as website hosting and moderating, mobile application hosting, data analysis, IT services, e-mail and direct mail delivery services, auditing services, and other services, in order to enable them to provide services
  • As we believe to be necessary, if permitted or required by applicable law

We may also use and disclose information collected through the website in other ways. We may also use and disclose information we collect passively as described above, under “Passive information collection,” and for any other purpose, except where we are required to do otherwise under applicable law (for example, if we are required to treat such information as personal information). In addition, we may use and disclose information that is not in personally identifiable form for any purpose.

The European General Data Protection Regulation (GDPR)

Our legal basis for processing your personal data:

Alzheimer Europe is subject to the Regulation 2016/679 of the European Union, the General Data Protection Regulation (GDPR). We only process your personal data when we have a valid legal basis to do so under the GDPR. More specifically, we only process your personal data if:

  • You have given us your consent to process your personal data for one or more specific purpose(s)
  • The processing is necessary to perform our contractual obligations towards you or other parties
  • We are required to undertake the processing operation in order to comply with a legal obligation
  • The processing is necessary for the legitimate interests of Alzheimer Europe or other EPND partners, provided that the processing does not unduly affect your fundamental rights and freedoms. In this respect, when processing your personal data based on legitimate interest, we always seek to ascertain appropriate balance between the relevant legitimate interest and your privacy.

The legitimate interests for which we process your data are as follows:

  • Ensuring efficient communication by responding to inquiries from our registered users, website visitors, and other persons contacting EPND
  • Administering the catalogue of neurodegenerative disease cohorts maintained by EPND. This includes managing the communication with, and (where applicable) user accounts of, persons designated as PIs and secondary contact points of cohorts
  • Facilitating IT infrastructure management and business continuity, including functioning of the EPND website and its associated user portal
  • Disseminating information about the EPND consortium (e.g., upcoming events featuring EPND partners, new scientific publications, and other relevant updates concerning EPND)
  • Measuring the usage of our website and improving the user experience (e.g., by monitoring web traffic statistics and collecting information regarding users’ behaviour on the EPND website)

Transfer of personal data outside the EEA:

In certain cases, your personal data may be transferred outside the EEA and processed in a country that does not offer the same level of personal data protection as EEA countries.

If your personal data are transferred outside the EEA, we will put in place suitable safeguards to ensure such transfers are carried out in compliance with the GDPR and other applicable data protection requirements. For example, we may use agreement with standard clauses published by the European Commission, or, if applicable, rely on your explicit consent to perform the transfer. You may request additional information regarding international transfers of your personal data and obtain a copy of the relevant safeguard(s) by exercising your rights as a data subject (described below).

Your rights as a Data Subject:

As a data subject within the meaning of the GDPR, you have certain rights afforded to you under Chapter III of the GDPR.

If you have provided us with your consent to process your personal data for one or more specific purpose(s), you have the right to withdraw your consent. Following your withdrawal of consent, we will no longer process your personal data for those purpose(s). Where we are processing your personal data based on the legitimate interests of one or more EPND partners, you have the right to object to that processing. You also have the right to access your personal data undergoing processing, and request to have incomplete or inaccurate information amended.
If you have any questions regarding how we process your personal data, or would like to exercise the rights afforded to you under the GDPR, please contact angela.bradshaw@alzheimer-europe.org

If you believe that the processing of your personal data by EPND infringes on the GDPR, you have the right to lodge a complaint with a competent supervisory authority. To do so, you can contact a supervisory authority in the Member State of your habitual residence, your place of work, or place of the alleged infringement.

How you can access, change, or delete your personal information

If you would like to review, correct, update, or delete the personal information that you have provided via the website, please contact us by sending an e-mail to angela.bradshaw@alzheimer-europe.org.

Updates to this privacy policy

Any changes to this privacy policy will become effective when we post the revised privacy policy on the website. Your use of the website following these changes means that you accept the revised privacy policy. This policy was last updated on 28 February 2023.

Contacting us

If you have any questions about this privacy policy, please contact us by sending an e-mail to angela.bradshaw@alzheimer-europe.org.