PHOENYCS FLY Study Website Privacy Policy
UCB or we means UCB Biopharma SRL, a company incorporated under the laws of Belgium with registered office at Allée de la Recherche 60, 1070 Brussels, Belgium.
As the controller, i.e. the legal entity that decides why and how information relating to you (personal data) is collected and processed in the context of this PHOENYCS FLY Study website (the Website), we respect your right to privacy.
We will only process your personal data as described in this PHOENYCS FLY Study website Privacy Policy (the 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).
We have a data protection officer (DPO), who can be contacted by any of the following means for any privacy-related questions, including regarding how we collect, store and use your personal data:
The Policy governs the collection, use and retention by UCB of personal data relating to your use of the Website. This Policy applies to all Website users.
The Policy consists of five main components and informs you about:
This Policy may be updated periodically to reflect changes in our personal data processing activities. In that case, we will post a notice on the Website to inform you of any significant changes.
The table below indicates per purpose (i) the categories of personal data we collect and process concerning you, (ii) the source, (iii) how long we retain your personal data, (iv) who we share it with, and (v) the relevant legal basis.
| Collects the following personal data about you: | 1. Electronic identification data (†). 2. Information collected through cookies(†). Failure to provide the personal data with an (†) may result in (some features of) the Website not being accessible |
| Obtains this personal data from: | You (through the device you use to access the Website). |
| Retains (**) your personal data for: | For cookies, see our Cookie Policy for more information |
| Shares your personal data with: | UCB subsidiaries / affiliates and third-party processors (as detailed in Section 5.A) |
| Relies on the following GDPR legal basis: | Processing necessary for the performance of a contract with you; For cookies, processing based on your consent except for functional cookies (see our Cookie Policy for more information). |
| Collects the following personal data about you: | 1. Electronic identification data (†). 2. Information collected through cookies(†). Failure to provide the personal data with an (†) may result in (some features of) the Website not being accessible |
| Obtains this personal data from: | You (through the device you use to access the Website). |
| Retains (**) your personal data for: | For cookies, see our Cookie Policy for more information |
| Shares your personal data with: | UCB subsidiaries / affiliates and third-party processors (as detailed in Section 5.A) |
| Relies on the following GDPR legal basis: | Processing necessary for the purpose of the legitimate interests pursued by UCB and entities acting on UCB’s behalf to protect their IT infrastructure and the data they hold. To this end, UCB strives to maintain a fair balance between its need to process your personal data and the preservation of your rights and freedoms, including the protection of your privacy. For more information or if you have any questions regarding how we assess this balance, please contact us at dataprivacy@ucb.com). For cookies, processing based on your consent except for functional cookies (see our Cookie Policy for more information). |
| Collects the following personal data about you: | 1. Electronic identification data (†). 2. Information collected through cookies(†). Failure to provide the personal data with an (†) may result in (some features of) the Website not being accessible |
| Obtains this personal data from: | You (through the device you use to access the Website). |
| Retains (**) your personal data for: | For cookies, see our Cookie Policy for more information |
| Shares your personal data with: | UCB subsidiaries / affiliates and third-party processors (as detailed in Section 5.A) |
| Relies on the following GDPR legal basis: | Processing necessary for the purpose of the legitimate interests pursued by UCB and entities acting on UCB’s behalf to protect their IT infrastructure and the data they hold. To this end, UCB strives to maintain a fair balance between its need to process your personal data and the preservation of your rights and freedoms, including the protection of your privacy. For more information or if you have any questions regarding how we assess this balance, please contact us at dataprivacy@ucb.com). For cookies, processing based on your consent except for functional cookies (see our Cookie Policy for more information). |
| Collects the following personal data about you: | Your contact details: *your first name, *last name, *e-mail address, postal address, ZIP code or city, phone number; Any legally required information Failure to provide the personal data with an * will lead to your request for information being denied or will prevent UCB or entities acting on UCB’s behalf from adequately responding to your query or request. |
| Obtain this data from | Directly from you |
| Retains (**) your personal data for: | For the duration of the service delivery |
| Shares your personal data with: | Third parties as detailed in the “HOW WE DISCLOSE PERSONAL DATA" section below), including but not limited to the applicable study site, its principal investigator and other site staff. |
| Relies on the following GDPR legal basis: | Processing necessary for the performance of a contract with you |
| Collects the following personal data about you: | No personal data is processed other than the personal data collected from you via cookies and log files when visiting the Website |
| Obtains this personal data from: | You via cookies and log files when visiting the Website (see explanation set out above). |
| Retains (**) your personal data for: | No identifiable data is stored after the visitor completes the poll/quiz. |
| Collects the following personal data about you: | Your contact details: *your first name, *last name, *e-mail address, postal address, ZIP code or city, phone number; Any legally required information; *Your request or query; Any other information you submit in free text fields Failure to provide the personal data with an *, prevents UCB from adequately responding to your query or request. |
| Obtains this personal data from: | Directly from you. |
| Retains (**) your personal data for: | For the duration of the service delivery |
| Shares your personal data with: | Third parties as detailed in the “HOW WE DISCLOSE PERSONAL DATA" section below), including but not limited to the applicable study site, its principal investigator and other site staff. |
| Relies on the following GDPR legal basis: | Processing necessary for the performance of a contract; Processing based on your consent for those comments that would subsequently be posted online. |
| Collects the following personal data about you: | *Patient’s details as legally required; *Information regarding adverse event (seriousness, date and unique identification number) or any other information that may be legally required. Failure to provide the personal data with an * will prevent UCB from complying with its legal obligations, including but not limited to reporting an adverse event in accordance with applicable laws. |
| Obtains this personal data from: | You; Your treating HCP. |
| Retains (**) your personal data for: | 10 years after the end of the marketing authorisation in any country where the UCB medication mentioned in the adverse event report was placed on the market |
| Shares your personal data with: | Competent regulatory and government agencies UCB affiliates and third party processors as detailed |
| Relies on the following GDPR legal basis: | Compliance with our legal obligations (including but not limited to pharmacovigilance Please also refer to the Privacy Policy, accessible online at https://phoenycsflystudy.com/study/us/en-US/content/privacy-policy| |
(**) We will retain your personal data in accordance with the retention periods set out in the table above. These retention periods, included in our data retention policy, are dictated by:
We will delete your personal data once the abovementioned retention periods will have expired or if you object to or if you withdraw your consent in relation to our processing of your personal data (to the extent such processing is based on your consent), except where we need to hold on to such data for the establishment, exercise or defense of legal claims, for the protection of the rights of another natural or legal person, for compliance with a European Union or European Union Member State legal obligation which requires such further processing or where we need to prove or enforce a transaction or contract or enforce our policies.
4.A. Your rights
Right to access
You have the right to obtain confirmation from us as to whether or not we process personal data concerning you, and if so, the right (as far as this does not adversely affect the rights and freedoms of others) to obtain a copy of your personal data from us.
For more information, please check Section 4.B “How to exercise your rights”.
Right to rectification
You have the right to ask us to rectify without undue delay any inaccurate personal data concerning you. You can also ask us to complete incomplete personal data regarding you by providing us with a supplementary statement containing such additional information.
For more information, please check Section 4.B “How to exercise your rights”.
Right to erasure
You have the right to ask us to erase without undue delay personal data concerning you, where one of the following grounds applies:
Please note that your right to erasure will not apply to the extent that processing is necessary for:
For more information, please check Section 4.B “How to exercise your rights”.
Right to restriction of processing
You have the right to obtain from UCB restriction of processing by UCB of your personal data where one of the following applies:
Please note that notwithstanding the above, we are still allowed to continue storing your personal data (throughout the period of restriction) or to process your personal data for the establishment, exercise or defense of legal claims or for the protection of the rights of another natural or legal person.
If you have requested restriction of processing, we will inform you before the restriction of processing is lifted.
For more information, please check Section 4.B “How to exercise your rights”.
Right to data portability
You have the right (insofar this does not adversely affect the rights and freedoms of others) to receive the personal data concerning you, that you have provided to UCB, in a structured, commonly used and machine-readable format and to transmit those data to another controller, without hindrance from UCB, where the processing is:
For more information, please check Section 4.B “How to exercise your rights”.
Right to objection to processing
You have the right to object at any time, on grounds relating to your specific situation, to the processing of your personal data by UCB which is based on UCB’s pursuit of its legitimate interests as a controller. In that case UCB will no longer process your personal data, unless:
For more information, please check Section 4.B “How to exercise your rights”.
Right to withdraw consent
Where the processing is based on your consent, you have the right to withdraw that consent at any time, without affecting the lawfulness of processing based on consent before its withdrawal.
For more information, please check Section 4.B “How to exercise your rights”.
4.B. How to exercise your rights
If you wish to exercise any of the rights mentioned above, you can always contact the local UCB Data Protection Officer by e-mail at dataprivacy@ucb.com or otherwise reach out to us by postal mail at UCB Biopharma SRL, To the attention of the data protection officer, Allée de la Recherche 60 1070 Brussels, Belgium. 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.
Right to lodge a complaint with supervisory authority
In accordance with article 77 GDPR you have the right to lodge a complaint with a supervisory authority, in particular in the European Union Member State of your habitual residence, place of work or place of the alleged infringement, if you consider that UCB’s processing of your personal data infringes the GDPR. Please visit the website of the relevant national supervisory authority for more information on how to submit such a complaint.
5.A. Who we share your personal data with.
Principle
We will disclose your personal data only as described in this Policy, as may be updated from time-to-time.
Affiliates and third party processors
Third party service providers include IT services and website hosting companies, (internet) connectivity providers, providers of data analytics (including Google) and tracking services, as well as service providers that provide technical and administrative support for the Website and underlying IT systems as well as providers that assist us with adverse event reporting (for more details, please refer to the table above). These service providers provide their services from locations within UK and the EU (including Germany, Malta and Ireland) and outside of the EU (in the UK as well as in the USA for The Rocket Science Group LLC d/b/a MailChimp and Google).
Other third parties include regulatory and government agencies (see further below in this Policy), our advisors and external legal counsel, our auditors, and potentially, third parties with whom UCB may merge or which may be acquired by UCB (see further below in this Policy).
Compliance with laws and legal proceedings
UCB will disclose your personal data where:
Other
If a third party acquires all (or substantially all) of our business and/or assets, we will disclose your personal data to that third party in connection with the acquisition. However, such disclosure will occur subject to and in accordance with applicable data protection laws, including the GDPR.
5.B. International transfers
UCB will transfer your personal data to its affiliates, including our affiliates outside of the EEA. In that case UCB relies on UCB’s Binding Corporate Rules, which can be accessed through the following link: https://www.ucb.com/UCB_BCRs.pdf.
As indicated above, your personal data may have to be transferred to certain third party service providers both within the EEA (including Germany, Malta, UK and Ireland) and outside the or the EEA (UK and USA), including for processing, storage, back-up, and to guarantee a continued service in case of major IT issues and outside of the EEA. Such non-EU countries may not offer the same level of personal data protection as the EEA countries. We will therefore put in place suitable safeguards to ensure such transfer is carried out in compliance with the applicable data protection rules.
You may request additional information in this respect and obtain a copy of the relevant safeguard by exercising your rights as set out above.
[The transfer of your personal data to (other) third party service providers outside of the EU (as set out above under Section 5.B) occurs on the basis of Standard Contractual Clauses that have been executed between UCB and the relevant third party service provider. For more information on these Standard Contractual Clauses, please reach out to us as set out above under Section 4.B (“How to exercise your rights”).]
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.
5.C. Links to third party sites
This Website contains links to other websites operated by third parties, including but not limited to [certain social media sites such as Facebook, Twitter, LinkedIn, YouTube, Vimeo etc.] This Policy does not apply to any website, other than this one. 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.