PRIVACY POLICY
Last Update: 18 January 2024
Zogenix International Limited, a company incorporated under the laws of England and Wales and a member of the UCB group of companies, with registered office at The Pearce Building, West Street, Maidenhead, Berkshire SL6 1RL, United Kingdom (“Zogenix”), cares about your privacy and wants you to be familiar with how we collect, use, and disclose information.
Zogenix acts as the controller, i.e. the legal entity that decides why and how information relating to you (“personal information”) is collected and processed in the context of this GEMZ Study website (the Website). Zogenix will process your personal information as described in this Privacy Policy and in accordance with the relevant data protection legislation, including Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (the General Data Protection Regulation or GDPR).
This Privacy Policy applies to all Website users and describes our practices in connection with the personal information that we or our service providers collect through the Website or application (hereinafter the “Service”) which is operated and controlled by our service provider ICON plc. together with its affiliates (“ICON”) from which you are accessing this Privacy Policy. By providing personal information to us or by using the Service, you acknowledge that you have read and understand this Privacy Policy.
USE OF WEBSITE BY MINORS
The Service is not directed to individuals under the age of 18, and we request that these individuals not provide personal information through the Service. If your child has submitted Personal Information and you would like to request that such Personal Information be removed, please contact us as explained below in the Contacting us section.
INFORMATION COLLECTION
Some areas of the Website may ask questions related to your health to assist the study site staff in determining your eligibility for the GEMZ study. In addition, the Website may ask you to submit personal information, such as your name, telephone number, and email address in order for you to be contacted by a member of the study site staff or your postal code, city, and/or country in order to find a study site near you. You will be informed what information is required and what information is optional.
The personal information that you choose to provide through the Website is processed by ICON on behalf of Zogenix and then provided to your selected study site, should you pass the pre-qualification process. The study site will receive and retain your information to contact you regarding potential participation in the GEMZ Study. ICON will not provide any information that directly identifies you (e.g. your name or contact information) to Zogenix.
If you submit any personal information relating to another individual to us, you represent that you have the authority to do so and to permit us to use the information in accordance with this Privacy Policy.
SENSITIVE INFORMATION
Unless we specifically request or invite it, we ask that you not send us, and you not disclose, any sensitive personal information (e.g., Social Security numbers, information related to racial or ethnic origin, political opinions, religion or philosophical beliefs, health, sex life or sexual orientation, criminal background, or trade union membership, or biometric or genetic data for the purpose of uniquely identifying an individual) on or through the Service or otherwise to us.
AUTOMATIC INFORMATION COLLECTION AND USE
We and our service providers may collect certain personal information automatically as you navigate around the Service. This Website uses the cookie consent tool "One Trust" from OneTrust. Please read the Cookie Policy for detailed information about the cookies and other tracking technologies used on the Service. Except where allowed by applicable law, we place cookies after having received your consent through the cookie banner or preference centre. The Cookie Policy includes information on how you may disable these technologies.
We and our service providers may also automatically collect and use your information in the following ways:
Through your browser: Certain information is collected by most browsers, such as your Media Access Control (MAC) address, computer type (Windows or Mac), screen resolution, operating system name and version, and Internet browser type and version. We may collect similar information, such as your device type and identifier, if you access the Service through a mobile device. We use this information to ensure that the Service functions properly.
IP address: Your IP address is a number that is automatically assigned to your computer by your Internet Service Provider. An IP address is identified and logged automatically in our server log files whenever a user visits the Service, along with the time of the visit and the pages visited. Collecting IP addresses is standard practice and is done automatically by many online services. We use IP addresses for purposes such as calculating Service usage levels, diagnosing server problems, and administering the Service. We may also derive your approximate location from your IP address.
Device Information: We may collect information about your mobile device, such as a unique device identifier, to understand how you use the Service.
HOW WE USE AND DISCLOSE INFORMATION
We use and disclose personal information you provide to us as described to you at the point of collection.
Where required by applicable law, we will obtain your consent to our use of your personal information at the point of information collection. We may also use personal information from or about you as necessary to perform a contract, to comply with a legal obligation (for example, due to our pharmacovigilance obligations), or for our legitimate business interests. Our legitimate business interests may include any or all of the following:
- to respond to your inquiries and fulfill your requests, such as to send you documents you request or e mail alerts;
- to send you important information regarding our relationship with you or regarding the Service, changes to our terms, conditions, and policies and/or other administrative information;
- to protect our IT infrastructure and the data it holds; and
- for other business purposes, such as data analysis, audits, developing new products, enhancing our website, improving our products and services, identifying Service usage trends, better understanding your interests so that we can serve you better, personalizing your experience on the Service by presenting products and offers tailored to you, and determining the effectiveness of our study recruitment.
In this regard, Zogenix strives to maintain a fair balance between its need to process your personal information and the preservation of your rights and freedoms, including the protection of your privacy.
We disclose information collected through the Website:
- to our affiliates and third party partners involved in the conduct of the GEMZ study;
- to our third party service providers who provide services such as website hosting and moderating, mobile application hosting, data analysis and map services (via Google), , infrastructure provision, IT services, customer service, e-mail and direct mail delivery services, , auditing services, and other services, in order to enable them to provide services; and
- to a third party in the event of any reorganisation, merger, sale, joint venture, assignment, transfer, or other disposition of all or any portion of our business, assets, or stock (including in connection with any bankruptcy or similar proceedings).
In addition, we use and disclose information collected through the Website as we believe to be necessary or appropriate: (a) as permitted by applicable law, including laws outside your country of residence; (b) to comply with legal process; (c) to respond to requests from public and government authorities, including public and government authorities outside your country of residence; (d) to enforce our terms and conditions; (e) to protect our operations or those of any of our affiliates; (f) to protect our rights, privacy, safety, or property, and/or that of our affiliates, you, or others; and (g) to allow us to pursue available remedies or limit the damages that we may sustain. We may also use and disclose information collected through the Website in other ways, with your consent.
We may use and disclose information we collect automatically as described above, under “Automatic Information Collection and Use.”
In addition, where allowed by applicable law, we may use and disclose information that is not in personally identifiable form for any purpose. If we combine information that is not in personally identifiable form with information that is identifiable (such as combining your name with your geographical location), we will treat the combined information as personal information as long as it is combined.
For more information on how Google processes your personal data within the framework of Google Analytics, please consult How Google uses data when you use our partners' sites or apps and their data retention policy described here.
For more information on how Google processes your personal data within the framework of the Google Maps API and their data retention policy, please consult the Google Privacy Policy: policies.google.com/privacy.
CHOICES AND ACCESS
How you can access, change, or delete your personal information
If you would like to review, correct, update, restrict, or delete your personal information, or if you would like to request to receive an electronic copy of your personal information for purposes of transmitting it to another company (to the extent these rights are provided to you by applicable law), please contact us via email at dataprivacy@ucb.com. Please clearly identify the right(s) you wish to exercise and include your contact details (including a valid e-mail or postal address) so that we can respond to your request. Please note that you may be asked to provide proof of your identity.
When you contact us to exercise any of the rights mentioned above, we will respond to your request within one month following receipt of the request. This period may be extended by two additional months where necessary, but in that case, we will inform you of any such extension within one month of receipt of your initial request together with the reasons for the delay.
CROSS-BORDER TRANSFER
Your personal information may be stored and processed in any country where we have facilities, affiliates or service providers, and by using our Service or by providing consent to us (where required by law), you agree to the transfer of information to countries outside of your country of residence, including to the United Kingdom and the United States, which may provide for different data protection rules than in your country. Appropriate contractual and other measures are in place to protect personal information when it is transferred to our affiliates or third parties in other countries.
Some non-European Economic Area (EEA) countries are recognized by the European Commission as providing an adequate level of data protection according to EEA standards (the full list of these countries is available here. For transfers from the EEA to countries not considered adequate by the European Commission, we have ensured that adequate measures are in place, including by ensuring that the recipient is bound by EU Standard Contractual Clauses, or an EU-approved code of conduct or certification, to protect your Personal Information. You may obtain a copy of these measures by contacting our data protection officer in accordance with the “Contacting Us” section below.
SECURITY
We seek to use reasonable organisational, technical, and administrative measures designed to protect personal information under our control. Unfortunately, no data transmission over the Internet or data storage system can be guaranteed to be 100% secure. If you have reason to believe that your interaction with us is no longer secure (for example, if you feel that the security of any account you have with us has been compromised), please immediately notify us in accordance with the “Contacting Us” section below.
RETENTION PERIOD
We will retain your personal information for as long as needed or permitted in light of the purpose(s) for which it was obtained. The criteria used to determine our retention periods include: (i) the length of time we have an ongoing relationship with you and provide the Service to you; (ii) whether there is a legal obligation to which we are subject; and (iii) whether retention is advisable in light of our legal position (such as in regard to applicable statutes of limitations, litigation, or regulatory investigations).
For example, if we collect your personal information for your participation in a clinical trial, we may need to store it for at least 25 years after the end of the clinical trial.
Please note, however, that this is not an exhaustive list of retention periods. Your personal information may be stored for a longer period using the criteria set forth in the first paragraph of this section, especially points (ii) and (iii).
THIRD PARTY SITES AND SERVICES
This Privacy Policy does not address, and we are not responsible for, the privacy, information, or other practices of any third parties, including any third party operating any site or online service (including, without limitation, any application) that is available through this Website or to which this Website contains a link (e.g., to a website of ICON or the International Foundation for CDKL5 Research). The availability of, or inclusion of a link to, any such site or property on the Website does not imply endorsement of it by us or by our affiliates. Third party websites are governed by their own terms and conditions. You should therefore always carefully check the privacy and cookie policies of third party websites before accepting to be redirected to them.
CONTACTING US
Zogenix International Limited (UK), located at The Pearce Building, West Street, Maidenhead, Berkshire SL6 1RL, United Kingdom, is the company responsible for collection, use, and disclosure of personal information under this Privacy Policy.
If you have any questions about this Privacy Policy, you may contact our Data Protection Officer by e-mail at dataprivacy@ucb.com or please write to the following address:
- Zogenix International Limited (UK), Attn: Data Protection Officer, The Pearce Building, West Street, Maidenhead, Berkshire SL6 1RL, United Kingdom.
In case of contacting the data protection officer, please include information on the website, and the clinical trial that your question may relate to.
LODGING A COMPLAINT WITH A REGULATOR
You may lodge a complaint with a supervisory authority competent for your country or region. Please click here for contact information for such authorities.
UPDATES TO THIS PRIVACY POLICY
We may change 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 Service following these changes means that you accept the revised Privacy Policy. We recommend that you regularly review the Privacy Policy when you visit the Service. This policy was last updated on 18 January 2024.
