Please read this Privacy Notice, together with any other privacy notice that we may provide to you, as it contains important information about how we collect, manage, use and protect your personal data. It also describes your data protection rights, including a right to object to some of the processing which we carry out. More information about your rights, and how to exercise them, is set out in the “Your rights” section below.

This Privacy Notice may also be used in conjunction with other privacy notices that we may provide you with in certain situations.

We may change this Privacy Notice from time to time. Please check this notice frequently to ensure you are aware of the most recent version and the date that it was last updated.

This policy was last updated in August 2020.

Who are we?
Kyowa Kirin International plc is part of the Kyowa Kirin Group. The Group is made up of different legal entities, details of which can be found here and which may be updated from time to time. When we say ‘KKI’, ‘we’ or ‘us’ in this policy, we are referring to the relevant company in the Kyowa Kirin Group responsible for processing your personal data.

KKI is a “data controller” of the personal data that we hold about you. This means that we are responsible for deciding how we hold and use personal information about you. We are required under data protection legislation to notify you of the information contained in this privacy notice.

What information do we collect?
Personal data, or personal information, means any information about an individual from which that person can be identified. It does not include data where the identity has been removed (anonymous data).

We may collect, use, store and transfer different kinds of personal data about you. What information we collect with depend on your interactions with us, for example, if you are a patient then the information collected may vary from the information we collect from health care professionals.

We have grouped together the types of information that we may collect from you as follows:

When you register for our newsletters or meetings or if you correspond with us:

  • Identity and Professional Data including name, gender, date of birth, marital status, family members, occupation, place of work, professional registration number, professional background and interests, medical specialisation(if you are a health care professional);
  • Contact Data including home address, business address, email address, phone numbers;
  • Transaction Data including details about payments to and from you;
  • Communications Data including your preferences in receiving communications from us;
  • Profile Data including your username and password, preferences, feedback and survey responses.

When you access our websites or consult our online materials:

  • Technical Data including the Internet protocol (IP) address used to connect your computer to the Internet, your login information, browser type and version, time zone setting, browser plug-in types and versions, operating system and platform;
  • Usage Data including the full Uniform Resource Locators (URL) clickstream to, through and from our site (including date and time), page response times, download errors, length of visits to certain pages, page interaction information (such as scrolling, clicks, and mouse-overs), and methods used to browse away from the page and any phone number used to call us;

Special Categories of Personal Data

We may also collect, store and use information about your health, including any medical conditions or disabilities whether through a clinical trial programme or otherwise.

How do we collect your information?

  • Information you give us. You may give us such information directly by registering with us, by participating in a clinical trial, completing forms, corresponding or speaking with us by phone, email, letter or otherwise, submitting a query, providing us with feedback about a product, visiting our website, requesting that we provide you with services / communications, or when we appoint you as a service provider.
  • Information we collect about you.
    • When you visit our website and receive e-mails from us we may automatically collect technical information about your equipment, browsing actions and patterns, if you have consented to us doing this. We collect this by using cookies.
    • Information provided by cookies.
      • Cookies are used to improve your experience while visiting our website. Where applicable this website uses a cookie control system allowing you on your first visit to the website to allow or disallow the use of cookies on your computer/device.
      • Cookies are small files saved to the user’s hard drive that track, save and store information about the user’s interactions and usage of the website. This allows our website, through its server, to provide users with a tailored experience.
      • If you wish to prevent the use and saving of cookies from this website on to your computer’s hard drive you should take necessary steps within web browser’s security settings to block all cookies from our website.
      • Our website uses tracking software to monitor its visitors to better understand how you use it. This software is provided by Google Analytics which uses cookies to track visitor usage. The software will save a cookie to the user’s hard drive in order to track and monitor engagement and usage of the Website, but will not store, save or collect personal information. You can read Google’s privacy policy here for further information
      • Other cookies may be stored on your hard drive by external vendors when our website uses referral programs, sponsored links or adverts. Such cookies are used for conversion and referral tracking and typically expire after 30 days, though some may take longer.
      • If you would like further information about cookies and how they are used, you can visit https://www.allaboutcookies.org/
    • When we e-mail you, such e-mails may contain tracking facilities if you have consented to this. Activity is tracked and stored in a database for future analysis and evaluation. Such tracked activity may include but is not restricted to: the opening of emails, forwarding of emails, the clicking of links within the email content, times, dates and frequency of activity.
  • Information we receive about you from other sources.
    • We may receive information about you if you use any of the other websites we operate or the other services that we provide. In this case we will have informed you when we collected that data that it may be shared internally and combined with data collected on this site.
    • We may receive information about you from healthcare professionals or pharmacies as a result of an adverse event report or complaint.
    • We also work with third parties (including, for example, business partners, sub-contractors in technical, payment and delivery services, advertising networks, analytics providers, search information providers, credit reference agencies) and may receive information about you from them. If you are a health care professional, we receive information about your professional life (such as medical specialisation and professional background) from IQVIA.
    • We may receive information if you have provided permission to other organisations to share it with us. Before providing permission to such third party organisations to share your personal data, you should check their privacy notices carefully.
    • We may take information from publically available sources (where possible) to keep your information up to date, for example, from professional registration databases.
    • We may occasionally purchase the contact details of people who might be interested in hearing from us. Before purchasing such information, we will check with the vendor that your information was originally collected in a compliant manner, to make sure that we only contact people who have actively expressed an interest in receiving information from third parties and where it is lawful to do so.
    • We may receive information about you if you apply for a vacancy at KKI.

How we might use your information?
We use information held about you in the following ways:

  • To manage and administer our relationship with you
  • To conduct clinical trials
  • To carry out our obligations arising from any contracts entered into between you and us
  • To respond to your requests
  • To provide you with information about our activities or tailored information about a programme that you have signed up to
  • To improve our level of service
  • To notify you about changes to our service and notify you of new products and services
  • To seek your views on our products and services
  • To consider your application for employment
  • For administrative and quality assurance purposes
  • To ensure that content from our website is presented in the most effective manner for you and for your computer
  • For the purposes of the establishment, exercise or defence of legal claims.
  • To administer our site and for internal operations, including troubleshooting, data analysis, testing, research, statistical and survey purposes
  • To provide and improve our site to ensure that content is presented in the most effective manner for you and for your computer
  • To allow you to participate in interactive features of our service, when you choose to do so as part of our efforts to keep our site safe and secure
  • To manage and follow up on Adverse Events reports
  • To record, investigate and respond to complaints
  • Information we receive from other sources. We may combine this information with information you give to us and information we collect about you. We may us this information and the combined information for the purposes set out above (depending on the types of information we receive).

Communications with you
We may text or e-mail you to provide you with information about our activities and products and services supplied by us. You can un-subscribe at any time through an automated system. This process is detailed at the footer of each email. If an automated un-subscription system is unavailable clear instructions on how to un-subscribe will be detailed instead.

We may occasionally, with your consent, call you to provide you with information about our activities or provide you with information about products and services supplied by us. You may unsubscribe to calls by instructing the person calling you or by contacting us at any time on the details set out in the ‘Contact Us’ section of this notice.

We may also communicate with you through postal marketing when it is in our legitimate interests to do this and when these interests do not override your rights. Those legitimate interests include providing you with information on our services, products and other activities and those of other carefully selected organisations. You have the right to contact us at any time and opt-out of receiving postal communications.

Profiling
We may use profiling and screening methods to produce relevant communications and provide you with a better experience.

To do this we may use additional external sources of data to increase and enhance the information we hold about you. This may include obtaining details of changes of address and other contact details.

If you do not wish for your information to be used in this manner, or have any queries about how we use your information, you can contact us on the details provided in the ‘Contact us’ section of this notice, at any time. You have an absolute right to opt-out of direct marketing, or profiling we carry out for direct marketing.

What is our legal basis for using your information?
There are a number of lawful reasons for us to process your personal data.

One of these is called ‘legitimate interest’ and means that we can process your personal data if (i) we have a genuine and legitimate reason; and (ii) are not harming any of your rights and interests.

Our aim is the development and commercialisation of innovative medicines for the treatment of unmet therapeutic needs.

We will use your personal data in order to help us achieve those goals and to give you the most appropriate information, products and services and to provide you with the best experience when dealing with us.

Whenever we process your personal data for our legitimate interests, we will consider and balance any potential impact on you and your rights under data protection law.

Other legal bases that we will rely on include the following:

  • If you purchase a product or service from us, we may process your personal data in order to fulfil our contract with you.
  • Where required, we will rely on your consent to send you e-mail marketing. In some cases we will rely on our legitimate interest to do so instead – for example if you have purchased a product or service from us or you represent a business. See the "Communications with you" section above for information about how to un-subscribe.
  • Where we are required to comply with our legal obligations, or to establish and defend our legal rights, or to prevent and detect crimes such as fraud.

Where we use special categories of personal data, for example, information about your health or genetic information, we may ask for your consent to such use. However, sometimes, for example if you are participating in a programme, there may be reasons of public interest or law that enable us to use this information without consent, for example, to ensure high standards of quality and safety of medicinal products. We may not rely on your consent if such processing is required for pharmacovigilance purposes. Pharmacovigilance is about drug safety means the monitoring of the effects of medical drugs in order to identify potential adverse reactions.

Sometimes your personal data may be used for statistical research but only in a form that no longer identifies you.

How long will we hold your information for?
We will hold your personal data on our systems for as long as is necessary to fulfil the purposes that we collected it for, including for the purposes of satisfying any legal, accounting or other reporting requirements.

By law, we are required to retain certain information for a prescribed period of time. In circumstances where there are no such legal requirements, to determine the appropriate retention period, we will consider the amount, nature and sensitivity of the personal data, the potential risk of harm from unauthorised use or disclosure of your personal data, the purposes for which we are processing your personal data and whether we can achieve those purposes through other means.

Therefore, some information may be kept for more or less time depending on how long we reasonably feel it is required for.

We review our retention periods for personal data on a regular basis.

In some circumstances we may anonymise your personal data (so that it can no longer be associated with you) for research or statistical purposes in which case we may use this information indefinitely without further notice to you.

If you ask us to delete your information in accordance with your rights set out below, we will retain basic information on a suppression list to record your request and to avoid sending you unwanted materials in the future.

Who we might share your information with
We will NOT sell your personal data to any third parties.

We may share your personal information with any member of our group where we have a legal basis for doing so.

We may share your information with selected third parties including:

  • When we use other companies to provide services on our behalf, e.g. answering questions about products or services, sending mail and emails, patient analysis, assessment and profiling and when using auditors or other professional advisors.
  • Business partners, suppliers and sub-contractors for the performance of any contract we enter into with them or you.
  • Analytics and search engine providers that assist us in the improvement and optimisation of our site.
  • IT service providers.
  • Clinical Research Organisations.
  • Healthcare Professionals.
  • If we run an event in partnership with other named organisations your details may need to be shared. We will be very clear what will happen to your data when you register.
  • If we merge with another organisation or form a new entity, your personal data may be transferred to that new entity.

We may disclose your personal information to third parties to:

  • Comply with any court order or other legal obligation or when data is requested by our regulators or by government agencies or law enforcement agencies or is required by any stock exchange rules where a member of the Kyowa Kirin Group is listed;
  • Enforce or apply our terms of use and any other agreements;
  • Protect the rights, property, or safety of us, our employees or others. This may include exchanging information with other companies and organisations for the purposes of fraud protection and credit risk reduction.

International transfers of personal data
As KKI is an international enterprise that consists of numerous entities worldwide, the data that we collect from you may be transferred to, and stored at, a destination outside the European Union (“EU”) for the purposes described in this policy, in particular to our parent company Kyowa Kirin in Japan. For a list of the other entities that your personal data may be shared with, please see https://www.kyowa-kirin.com/about_us/worldwide_locations/index.html#pharmaceuticals

It may also be processed by staff operating outside the EU who work for us or for one of our suppliers. Such staff may be engaged in, among other things, the processing of your payment details and the provision of support services.

Data may be transferred to and hosted by a third-party IT service provider in the countries outside of the EU as part of selected ‘Cloud’ services adopted by Kyowa Kirin International for the purposes of carrying out normal business practices. We may also share your data with other selected unaffiliated service providers or consultants acting on our behalf, such as external marketing agencies, speciality advisory services or lawyers.

If we do this, your personal information will continue to be subject to one or more appropriate safeguards set out in the law, for example we may use model contracts in a form approved by regulators. We will take all steps reasonably necessary to ensure that your data is treated securely and in accordance with this privacy policy. A copy of the relevant mechanism can be provided for your review on request to the contact details below.

If you fail to provide personal data
Where we need to collect personal data by law or under the terms of a contract we have with your or if you wish to participate in a programme and you fail to provide that data when requested, we may not be able to perform the contract we have with you or permit you to participate in the programme. If this is the case, we will notify you at the time.

Your rights
You have a number of rights. If you would like to exercise any of these rights, please contact us using the details set out below in the ‘Contact Us’ section. If you exercise any of these rights we may ask for proof of identity and sufficient information about your interactions with us so that we can locate your personal information. If we agree that we are obliged to provide personal information to you (or someone else on your behalf), we will provide it to you or them free of charge except in exceptional circumstances.

You also have the right to lodge a complaint with your local data protection regulator, if you have concerns about how we use your personal information. You can contact your local authority on the links below:

Luxembourg: Commission nationale pour la protection des données - https://cnpd.public.lu/en/support/contact.html

Belgium: Autorité de protection des données - https://www.autoriteprotectiondonnees.be/citoyen/agir/contact

Your rights include:

  • transparency over how we use you data and to make a subject access request (right of access);
  • a right to have your personal data updated and corrected (right of correction/rectification)
  • a right to ask us to delete your information (right to be forgotten);
  • a right to ask us to stop processing your information (right to restriction);
  • a right to object to (i) processing based on our legitimate interests; (ii) processing of your information for direct marketing purposes; and (iii) automated decision making and profiling (right to object);
  • a right to receive a copy of your information, or have this sent to a third party (right to data portability); and
  • a right to claim compensation for material or non-material damage caused if we breach the data protection rules (right to compensation).

If you would like to find out more about your rights, you can visit the website of your local data protection authority.

Contact Us
If you have any questions regarding this policy or about our privacy practices, wish to exercise any of your rights or wish to make a complaint, please contact our Data Protection Officer at:

  • E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.
  • Post: Kyowa Kirin Pharma B.V. Postbus 311, 2130 AH Hoofddorp and marking your query for the attention of The Data Protection Officer
  • Telephone: +32 (0)800-50082