Participant in Clinical Trial
Privacy Notice
Last updated: May 2024

Chugai Pharma Europe Ltd (referred to as “we”, “us” or “our” or “Chugai”), is the European branch of Chugai Pharmaceuticals Co, Ltd, a Japanese pharmaceutical company and Sponsor of the ACERs Study. Chugai respects your right to privacy and treats all your personal data in accordance with this Privacy Notice and applicable privacy and data protection laws. In collecting and processing any personal data, Chugai is the controller of your personal data. This Privacy Notice explains who we are, how we collect, share and use personal information about you and how you can exercise your privacy rights.

If you have any questions or concerns about our use of your personal information, please contact us using the contact details provided at the ‘Contact Us’ section of this Privacy Notice.

Scope of this Privacy Notice

This Privacy Notice applies to personal data being collected and processed in relation to Chugai’s patient directed websites. When you visit and you choose to participate in any survey, Chugai will collect and process personal data about you, as detailed in this Privacy Notice.

We ask you please read this Privacy Notice carefully to ensure you don’t miss any information that may be relevant to you.

Our Lawful Basis

Chugai has a legitimate interest to conduct this processing relating to its scientific research purposes. The collection and processing of your data is of a research nature.

The purpose of the study website is to assess your eligibility to participate in one of our clinical trials. If you have been diagnosed with the disease related to a particular trial, you will have the option to participate in one of Chugai’s eligibility surveys.

The survey is anonymous, and we do not collect or process any personally identifiable data from you. Should you be eligible and be interested in participating in our trial you will be given the option to provide your name and contact details so your preferred clinical trial site can contact you for further eligibility assessment. Chugai will not have access to or store this data and will not be able to link it to any of the responses you provide; your name and contact details are sent directly to the clinical trial site.

Under the UK General Data Protection Regulation (GDPR), the lawful basis we rely on for processing this information are:

• processing is necessary for the purposes of the legitimate interests pursued by Chugai
• the processing of special categories of data, such as health data is necessary for scientific research purposes

How we get the information?

Personal information we process is provided to us directly by you, for one of the following reasons:

• If you decide to complete an eligibility survey in one of our trial websites
• If you are interested to participate in the clinical trial and you provide your contact details

Why and what type of information will we collect in relation to your participation?

Your privacy is important to us and we take necessary steps to protect your personal data at all times; we would therefore like to collect as little personal information about you as possible.

Processing Scenario	Categories of Personal Data	Purpose	Legal Basis	Retention Details	Details
Completion of eligibility survey in relation to a disease	Health data	Assessment of eligibility criteria to participate in a clinical trial	Legitimate interest (research purposes, as stated above)	Not stored by Chugai	This data is anonymous and will not identify you.
Provision of contact details for further information and assessment	Health data Name Surname e-mail Phone Number	Assessment of eligibility criteria to participate in a clinical trial	Legitimate interest (research purposes, as stated above)	Not stored by Chugai	If you decide to provide your contact details, the fact that you meet key study eligibility criteria will be evident to the site receiving your details. Site will provide you with further privacy information. Chugai will not have access to your identifying data.
When you interact with our website, we may collect technical information	Automatically collected Information; Web server logs/IP addresses; cookies	Website administration, managing network and data security	Legitimate interest		This data is anonymous and will not identify you. See section below

Technical Information and Cookie Policy

When you interact with our website, we may collect technical information as described below:

• Aggregate Information: such as statistical or demographic data. Aggregated data may be derived from your personal data but is not considered personal data in law as this data does not directly or indirectly reveal your identity. For example, we may aggregate your usage data to calculate the percentage of users accessing a specific website feature. However, if we combine or connect aggregated data with your personal data so that it can directly or indirectly identify you, we treat the combined data as personal data which will be used in accordance with this privacy policy.
• Browse Public Pages on our Websites: If you browse public pages on our website, i.e. content that you can access without being logged in to an account you may have with us, we collect and process only non-sensitive information about you.  In particular, we will not collect any health-related information about you when you browse public pages on our websites. We will however, process your personal information to the extent required to deliver the public content you request from us, for example to format it for your browser.  We will also process your personal information to meet our legitimate interests to protect the security of our website systems, and to measure the audiences for the various types of content provided.

To do this we use Automatically Collected Information: We automatically receive certain types of information whenever you interact with us on our website and in some e-mails, we may send each other. Automatic technologies we use may include, for example, web server logs/IP addresses, cookies, web beacons and third-party application and content tools. These technologies may be updated from time to time to reflect new functionalities that are available. We use the following cookies:

• Strictly necessary cookies: These are cookies that are required for the core functionality and operation of our website. They include cookies that enable security, network management, and accessibly (such as language). You may disable theses by changing your browser settings, but this may affect how our website works.
• Analytical/performance cookies: These cookies allow us to recognise and count the number of visitors and to see how visitors move around our website when they are using it. This helps to improve the way our website works, for example, by ensuring that users are finding what they are looking for easily. These cookies do not collect information that identifies a visitor. All information that these cookies collect is aggregated and therefore anonymous. 

Sharing of Data

Chugai retains control and responsibility for the use of your information; however, as stated above, should you choose to share your contact details with us, we will share them with the clinical trial site you have chosen as preferred. Whenever Chugai shares your personal data with a site, this will be done on a need-to-know basis.

All third-party recipients we may share your information with are required to comply with applicable data protection laws.

No transfers outside of the UK are envisioned; however, should there be any transfers required, Chugai will only transfer data to countries outside the UK and EEA when satisfied that both the party which handles the data and the country it is processing it in provide adequate safeguards for personal privacy.

Retention Period

Chugai will only process your personal data for as long as needed . We only retain personal information we collect from you where we have a genuine business need to do so, once the retention period has been reached we will securely delete your personal data. Even if we delete your personal data it may persist on backup or archival media for an additional period of time for legal, tax or regulatory reasons or for legitimate and lawful business purposes.

Security

Chugai takes precautions to ensure that personal data is protected and that the processing is in accordance with applicable data protection rules, consistent with generally accepted industry standards, including technical, administrative, and physical safeguards to protect the personal data submitted to us from loss, misuse and unauthorised access, disclosure, alteration and destruction.

What happens if you do not provide Chugai with any personal data

Your decision to complete a survey and provide any personal data to Chugai is purely voluntary. Chugai will collect and process personal data as stated above. If you do not agree with a processing or do not wish to provide your personal data, unfortunately you will not be able to participate in the eligibility survey.

Your Rights

You have the right to be informed, to request access to data we hold about you, to rectification or (in some cases) erasure of personal data held by Chugai and can request that we restrict processing or object to it. If you wish to make use of one of these rights, please email our DPO, using the details below.

If we have asked for your consent in order to process your personal data, you can withdraw this consent in whole or part at any time. To withdraw consent, please email our DPO, who will explain the consequences of doing so in any particular case and initiate proceedings for withdrawing consent.

Your Right to Complain

You also have the right to lodge a complaint at any time to the relevant supervisory authority for data protection issues, the Information Commissioner’s Office (ICO). We would, however, appreciate the chance to deal with your concerns before you approach the supervisory authority, so please contact us in the first instance.

Contact us

Chugai has appointed a data protection officer (DPO) who can respond to any enquiries about our use of your personal data. If you have any questions about this policy, including any requests to exercise your legal rights, please contact our DPO using the details set out below:

• Post: Data Protection Officer, Chugai Pharma Europe, Mulliner House, Flanders Road, Turnham Green, London, W4 1NN United Kingdom
• e-mail: [email protected]
• Phone: +44 (0)208 987 5600