Data Privacy Policy

Our Commitment to Privacy and Data Processing

UCB Biopharma SRL, having its registered address at Allée de la Recherche 60, B-1070 Brussels, Belgium (“UCB”) is committed to maintaining the highest level of confidentiality regarding the personal information that either we or our third-party vendors collect, use, maintain, and disclose.

This Policy applies to this website www.betogetherstudy.com (“Website””) which is only intended for visitors in the United States of America and is provided and maintained by Trialbee AB, company registration number 556814-3019, having its address at Södra Tullgatan 3, 211 40 Malmö, Sweden (“Trialbee”) on behalf owned by UCB. As used in this Privacy Policy, “You” or “Your” refers to users of this Website. “We” or “Us” includes UCB and its related companies and Trialbee. For offline interactions with UCB, this policy supplements (but does not replace) any other policy or notice provided to You as part of Your offline interaction(s) with Us. This Privacy Policy does not apply to third-party websites to which this Website may link.

This Privacy Policy describes how Trialbee AB gathers, processes, stores, and shares personal data on behalf of UCB.

This privacy policy informs You of the principles governing our use of the personal data which You submitted, or we obtained by You via this Website or by registering as a user of the online services which we provide.

In the United States of America, the Federal Trade Commission has authority over our compliance when applicable regarding personal data. If You do not agree to the terms of this privacy policy, You should not access or use this Website.

UCB as study sponsor intends to conduct a clinical study with the purpose of evaluating the efficacy of an investigational drug when administered in pediatric patients with plaque psoriasis. With regards to the processing of You and Your child’s personal data during the application process UCB is the data controller responsible for processing You and Your child’s personal data in accordance with applicable data protection legislation. However, UCB has assigned Trialbee the task of processing You and Your child’s application for the study.

This privacy policy describes how Trialbee acting as data processor collects, uses, processes, and protects You and Your child’s personal data and informs the choices available to You and Your child regarding how You and Your child can manage Your personal data.

If You are interested in Your child participating in this study sponsored by UCB, Trialbee will ask You, on behalf of UCB, to provide certain information about Yourself and Your child to process Your application for the study. This allows us to evaluate Your child’s eligibility for the study and to contact You during the application process. The information we intend to collect are You or Your child’s name, telephone number(s), e-mail address, and answers to questions we ask You for determining Your child’s eligibility. These answers may include information about Your child’s health. Health information is only used for the purposes of determining Your child’s eligibility for the clinical study.

Information about You and Your child is stored in Trialbee’s system until the clinical study recruitment is completed or until You request that the data is deleted, whichever occurs first. 

You can at any time withdraw Your consent to the processing of Your personal data for the purposes of evaluating Your application by contacting Trialbee at [email protected]. If You withdraw Your consent, then Trialbee will stop processing Your personal data. If Your information has been shared with a trusted third party, we will notify them of Your withdrawal. If You have chosen to participate in the clinical trial and have signed the Informed Consent Form (“ICF”), You will need to communicate Your request with the research center.

Data Subject Information

Information about Trialbee’s (the Processor) processing of You and Your child’s personal data on behalf of UCB (the Controller) in order to register You and Your child’s information for this clinical study is listed below.

Categories of Personal Data

Name, telephone number(s), e-mail address, gender, age, and answers to questions we ask You for determining Your child’s eligibility. These answers may include information about Your child’s health.

Purpose of Processing

To administer You and Your child’s registration for the study by evaluating Your child’s eligibility and contacting You on behalf of Your child during the pre-qualification process.

Legal Basis for Processing

Your consent.

Legal Basis for Processing Personal Data Regarding You and Your Child’s Health

Your consent.

Categories of Recipients

The personal data will be processed by Trialbee on behalf of the Controller. You and Your child’s personal data may also be shared with those involved with processing Your child’s application on behalf of Trialbee, i.e., medical professionals acting on behalf of the Controller and/or engaged by Trialbee on behalf of the Controller and/or staff from a study clinic (also known as a research center, or site) who may contact You to determine Your child’s study eligibility. These will be the only parties with access to this information.

Retention Period

Trialbee will retain You and Your child’s personal data, on behalf of the Controller, until the clinical study recruitment is completed or until You request that the data is deleted, whichever occurs first.

Your Rights

In accordance with applicable data protection legislation, You have a right to request access to or rectification of You and Your child’s personal data. Further, and to the extent set out in applicable data protection legislation, You may request erasure of personal data or restriction of the processing of You and Your child’s personal data. Under certain circumstances, You also have a right to object to processing as well as the right to data portability in accordance with applicable data protection legislation. If You want to exercise any of the above-mentioned rights, please do not hesitate to contact Trialbee (see contact details above). Where the processing of You and Your child’s personal data is based on Your consent, You can withdraw such consent at any time by contacting either the Controller or Trialbee. Should You be dissatisfied with our processing of You and Your child’s personal data, please let us know, and we will do our best to meet Your complaints. Your integrity is important to us, and we always strive to protect and secure You and Your child’s personal data in the best viable way. Should we nevertheless, in Your opinion, fail in this ambition, please note that You have the right to lodge a complaint at any time to the relevant supervisory authority in the country where You reside.

Processor

Trialbee has a data protection officer who is responsible for dealing with questions, and/or requests in relation to this privacy policy. If You have any questions about this privacy policy, including requests to exercise Your legal rights, please contact the data protection officer using the contact details below:

Full name of legal entity: Trialbee AB, Data Privacy Officer

Email Address: [email protected]

Complaints

You have the right to make a complaint at any time to the relevant supervisory authority in the country where You reside.

We would however appreciate the chance to deal with Your concerns before You approach one of the national supervisory authorities, so please contact us in the first instance at [email protected].

To find more about this right and to locate the appropriate Data Privacy Authority, go to the following:

If You reside in the United States, You may contact the US Federal Trade Commission at: https://www.ftc.gov/faq/consumer-protection/submit-consumer-complaint-ftc

Consent

Your use of this Website is subject to this Privacy Policy, any referenced Legal Notice, and any referenced Terms of Use. By using this Website, You agree with the terms of this Privacy Policy in addition to any other posted policy found on the Site. Whenever You submit information via this Website, You consent to the collection, use, disclosure and storage of You and Your child’s information and other information received by Us as a result of such use in accordance with these policies and as permitted or required by applicable law.

About Children

This website is directed at an adult audience (such as individuals interested in clinical research, healthcare professionals, investors, and individuals seeking information about Trialbee and our products and services). We do not knowingly collect information from children. Please do not use this website if You are under eighteen. We encourage parents to talk to their children about their use of the Internet and the information they disclose via the Internet.

Personal Information or Personal Data

“Personal information” or “Personal Data” means information that identifies You or Your child or could reasonably be used to identify You or Your child, and which is collected and/or maintained by UCB or Trialbee in an accessible form. Although the types of personal information We collect and share depend on the nature of Your relationship with UCB or Trialbee, as well as requirements of applicable laws, below are general categories of personal information that we may collect (either directly or indirectly).

Direct Information Collection

In general. We collect and store personal information You enter on this Website or otherwise voluntarily share with Us. This may include:

• Direct Identifiers such as:
  • Identity data includes first name, given name, last name, username, or similar identifier.
  • Contact data includes physical address, delivery address, email address, and telephone numbers.
• Personal Characteristics such as You and Your child’s age, ethnicity, gender, citizenship, primary language or You and child’s relationship to a disease (e.g., as a healthcare provider, a researcher, a diagnosed patient, a friend or relative of such a patient).
• Health data including information in relation to any aspect of Your child’s health and/or consequences of taking part in this clinical trial. For example, Your child’s Health Information such as the date of Your child’s medical diagnosis or information related to medication(s) taken or other treatment(s) such as Your child’s experience with certain therapies.
• Technical data includes Internet Protocol (“IP”) address, login data, browser type and version, time zone setting and location, browser plug-in types and versions, operating system and platform, and other technology that is on the device You use to access this Website.

Occasionally, we may obtain sensitive personal data, for example, information relating to Your child’s physical or mental health or condition, but only if You voluntarily provide us with this information and consent to our collection of such information for the purposes set out in this Privacy Policy and any specific privacy statement provided.

Other categories of personal information may be collected from time to time and will be described wherever the request for personal information occurs (whether on this Website or offline).

You may choose not to provide You and Your child’s personal information to UCB or Trialbee, but in general, some information about You and Your child is required in order for You to interact with UCB or Trialbee. Examples include: a Website registration process; asking a question to UCB or Trialbee; or to initiate a transaction on our Website. If You choose not to provide certain personal information to UCB or third-party vendors (in this case Trialbee) it may not be possible to respond to Your query or transaction.

Information collected automatically. We automatically collect some information about Your computer when You visit this Website. For example, We may collect Your IP address, web browser software (such as Microsoft Edge), or Your language preference. We also may collect information about Your online activity within our Website, such as the pages You visited. One of our goals in collecting this automatic information is to help customize Your user experience.

Cookies. We may assign Your computer a “cookie” (a small, unique identifier text file). For example, whenever You sign into the Website, We record Your member ID and name on Your member account in a cookie file on Your computer. We also may record Your password in this cookie file if You check “Remember me.” You can always choose not to receive a cookie file by enabling Your Web browser to refuse cookies or to prompt You before accepting a cookie. When You accept cookies, You consent those cookies will be stored on Your computer, tablet, or smartphone. Please note that if You refuse to accept cookies from a Website, You may not be able to access some of the tools We offer.

Trialbee Cookie Statement

We use cookies to make the Website work optimally. Cookies are used to save Your settings, analyse how You browse, and customize content to suit You. They are also used to promote our services, and some cookies come from companies we work with.

Analytics information. Our Website may use tools like Google Analytics to measure traffic to Our Site and how users interact with Our Site. Google Analytics employs cookies in order to facilitate an analysis of Your use of this site; the information generated by these cookies, such as time, place and frequency of Your visits to our Website, including Your IP address, is transmitted to Google’s location in the US and stored there.

Website users who do not want their data collected with Google Analytics can install the Google Analytics opt-out browser add-on. This add-on instructs the Google Analytics JavaScript running on websites to prohibit sending information to Google Analytics.

To opt-out of Analytics for the web, visit https://tools.google.com/dlpage/gaoptout/ and install the add-on for Your browser. For more details, please see the relevant help resources for Your specific browser.

For more information, please review our Cookie Policy.

Use of Information

Except as otherwise stated, We may use Your personal information for the following general purposes:

• to provide You with the services You request, including any follow-up activities.
• to manage Your account.
• to respond to Your questions and comments.
• to measure interest in and improve the content of this Website.
• to customize this Website to Your preferences.
• to analyze and better understand Your needs, preferences, and interests.
• to send You information about products in which You may be interested.
• to solicit information from You, including through surveys.
• to resolve disputes or troubleshoot problems.
• to enforce our Terms of Use or Legal Notice; and
• for other purposes specified in this Privacy Policy or described to You at the point of collection.

For information regarding Your choices about such uses, please review the “Your choices” section of this Privacy Policy below. We will not sell Your name, address, e-mail address, or any other personal information to another party for their own marketing use.

Disclosure of Information

We will use You and Your child’s personal data in the following circumstances:

• To perform the services or provide the products that You request.
• To find people who do similar online activities as You or share similar interests and present them with content about a possible research opportunity. This may also be referred to as “look-a-like modelling,”
• To perform legal obligations to You, our clients, or as required by law,
• Where we need to comply with a legal or regulatory obligation.

We may disclose You and Your child’s personal information to a third party for a business purpose. For example, We may disclose You and Your child‘s personal information:

• to third-party service providers We use to support our business (e.g., Internet service providers, hosting companies, financial institutions, and companies that provide business analytics, fulfillment services, technical support, and delivery services).
• to trusted third-party businesses with which We partner to offer You products and services.

• Clinical research centers, sites, or clinics who are conducting the clinical trial that You submitted Your child’s information for.

• to pharmaceutical industry regulators such as the U.S. Food and Drug Administration, if required to do so by applicable laws.
• in connection with a corporate transaction, such as the sale, assignment, or other transfer of the business.
• in response to subpoenas, court orders, or other legal process; to establish or exercise our legal rights; to defend against legal claims; or as otherwise required by applicable laws or government regulations.
• to protect and defend the rights of UCB, any Website or the users of any Website.
• under circumstances We believe reasonably necessary to protect the personal safety of users of UCB, Inc.’s products and services, this Website, or the public; or
• as is otherwise described in this Privacy Policy or at the point of collection.

We also may share aggregate or anonymize information with third parties, including advertisers and investors. This information does not contain any personal information and is used to develop content and services We believe You will find of interest.

We will not share You or Your child’s personal data unless:

• We have informed You otherwise and obtained Your permission, or
• There is a legal or regulatory obligation, or
• The law forces us to share the data.

In relation to using You and Your personal data as described above, we will only do so where (i) we have Your consent or (ii) You are an existing recipient of these communications. You have the right to withdraw consent to marketing at any time by contacting us by emailing us at [email protected].

Declaration of Consent

Trialbee study websites will describe how we plan to use Your data. This consent area usually appears before or after an online questionnaire, but always before You submit any personal data to us.

Protecting You and Your child’s Personal Information

UCB has adopted a number of recognized standards to protect the privacy of You and Your child’s information, and We have provided a description and an example of these standards below. However, not every particular use or disclosure in every category will be listed.

We restrict and protect how You and Your child’s personal information is used. We have guidelines which limit access only to those who have a reasonable need to use You and Your child’s personal information. In addition, We limit how You and Your child’s information is used to reasonable and legitimate business purposes. Finally, We may use You and Your child’s personal information for business management and administration or to carry out Our legal responsibilities.

We restrict and protect how You and Your child’s information is disclosed. As a global company with worldwide operations, We may share Your and Your child’s personal information with other UCB or Trialbee entities outside the United States. We limit these “affiliate disclosures” to circumstances where there is a legitimate business need, and any further use or disclosure of You and Your child’s personal information is protected by this privacy policy and any applicable, country-specific privacy policy, law, or regulation.

For disclosures to third parties, it is Our standard practice to require those third parties keep You and Your child’s personal information confidential and to use You and Your child’s personal information only in a limited manner and in accordance with applicable data protection laws and regulations.

We will not sell or license You or Your child’s personal information to third parties except in connection with the sale or transfer of a product line or division, or in connection with a joint marketing program.

We have put in place the appropriate security measures to prevent You and Your child’s personal data from being lost, used, or accessed in an unauthorized way, altered, or disclosed. In addition, we limit access to You and Your child’s personal data with least privilege to You and Your child’s personal data to those employees, agents, contractors and other third parties who have a business need to know. They will only process You and Your child’s personal data on our instructions, and they are subject to a duty of confidentiality.

We have procedures in place to deal with suspected data security breaches and will notify You and any applicable regulators of breaches in accordance with relevant legal requirements.

If You have reason to believe that You and Your child’s personal information is no longer secure (for example, if You feel that the security of You and Your child’s account has been compromised), please immediately notify Us using the contact information below.

We conduct privacy and security training and education programs. We provide appropriate training to staff who have permanent or regular access to personal information, who are involved in the collection of personal information, or in the development of tools used to collect, use, or share personal information.

Your Choices

You may choose:

• not to provide personal information, but that may result in Your inability to obtain certain services or use certain features of our Website.
• to stop receiving commercial e-mails from Us in any such message We send or by sending an e-mail to the contact address at the bottom of this policy.
• to delete or decline cookies by changing Your browser settings. (Click “Help” in the toolbar of most browsers for instructions.) If You do so, some of the features and services of our Website may not function properly; or
• to review and update You and Your child’s personal information by contacting Us at the link below.

Data Retention

We will only retain You and Your child’s personal data for as long as necessary to fulfil the purpose we collected it for, including for the purpose of satisfying any legal, accounting, or reporting requirements.

To determine the appropriate retention period for personal data, we consider the amount, nature, and sensitivity of the personal data, the potential risk or harm from unauthorized use or disclosure of You and Your child’s personal data, the purposes for which we process You and Your child’s personal data, and whether we can achieve those purposes through other means, along with the applicable legal requirements.

We also anonymize You and Your child’s personal data (so that it can no longer be associated with You or Your child) for research or statistical purposes in which case we may use this information indefinitely without further notice to You.

Access and Deletion Requests

If permitted by local laws, You have the right to request access to (or correction of) the personal information We have collected about You and Your child in a portable and readily usable format. In addition, You can request that We delete You and Your child’s personal information in accordance with local laws. Please submit Your request(s) using the email address listed below. We do not charge a fee to process or respond to Your verifiable request unless it is excessive, repetitive, or manifestly unfounded. If We determine Your request warrants a fee, We will explain why We made that decision and provide You with a cost estimate before completing Your request.

If You wish to exercise any of the rights set out above, please contact us at [email protected].

Use of Health Data in The United States

The Health Insurance Portability and Accountability Act of 1996 (“HIPAA”) and subsequent regulations published by the Department of Health and Human Services (“DHHS”) impose restrictions on other organizations (Covered Entities) which may be covered under HIPAA with respect to Your relationship with us. We may, in providing recruitment services for one of these organizations, be required to comply with certain aspects of HIPAA in their conduct of human subject research activities.

Although we are not a Covered Entity as defined in the HIPAA privacy regulations, our policies, and procedures, which govern the privacy rights of research participants included in this privacy policy, are compatible with those required by HIPAA for Covered Entities and will become standard for research activities involving protected health information (“PHI”).

All PHI collected by us in connection with clinical study recruitment is captured electronically and transmitted through a secure network connection to a secure database. Our data security policies are consistent with Good Clinical Practices, HIPAA, and European GDPR standards.

California Consumer Privacy Act

The California Consumer Privacy Act of 2018 (CCPA) gives California consumers the right to know what personal information is collected about them, how it will be used and to whom it is disclosed. In addition, the CCPA provides You (as a California resident) with specific rights subject to certain exceptions.

• The Right to Know. You have the right under the CCPA to request that We disclose what personal information We collect, use, disclose, and sell.
• The Right to Deletion. You have the right under the CCPA to request deletion of any personal information about You and Your child that We have collected from You.
• The Right to Opt-Out. You have the right under the CCPA to opt-out of the sale of You and Your child’s personal information.
• The Right to Non-Discrimination. You have the right under the CCPA not to be discriminated against for exercising Your rights.

Please note that some of the personal information that We collect, use, and disclose may be exempt from the CCPA because it is regulated by other federal and state laws that apply to Us.

Nevada Privacy Law

We do not sell Covered Information as defined under Nevada law.

Opting Out of Communications from Trialbee

You can opt-out and request us to stop sending You information, and/or reminders, at any time by contacting us at [email protected].

Opting out of receiving information, and or reminders, will not impact the personal data provided to us because of a product/service such as registration, product/service experience or other transaction.

Links to Other Websites

This Website may contain links or references to other websites. Please be aware that We do not control other websites and that, in any case, this Privacy Policy does not apply to those websites. We encourage You to read the privacy policy of every website You visit.

International Users

Unless otherwise stated, this Website is intended for use only by U.S. residents. Any personal information You voluntarily share with UCB or Trialbee may be stored and processed in any country where we have facilities or service providers and delivered to servers located in the United States or other countries. By using the Website, You consent to the transfer of any and all personal information that You provide to Us and to our use and disclosure of such personal information as outlined in this Privacy Policy.

How to Contact Us

If You have any questions, comments, or concerns about this Privacy Policy or the information practices of this Website, You can contact Us at Trialbee; [email protected].

Changes to this Privacy Policy

Without prejudice to Your rights under applicable law, We reserve the right to amend this Privacy Policy without prior notice to reflect technological advancements, legal and regulatory changes, and good business practices. If We change our privacy practices, an updated version of this Privacy Policy will reflect those changes and We will notify You of such changes by updating the effective date stated herein.