Privacy Policy

Effective Date: July 2024

Our commitment to privacy

UCB, Inc. is committed to maintaining the appropriate technical and organizational measures to ensure an adequate level of privacy, confidentiality, and security regarding the personal information that we collect, use, maintain, and disclose. This Privacy Policy explains how the personal information you input into CareCompass is handled by UCB within the United States.

As used in this Privacy Policy, “You” or “Your” refers to users of CareCompass. “We” or “Us” includes UCB, Inc. (“UCB”) and its related companies. 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 CareCompass may link.

UCB is not a healthcare provider (e.g., a doctor, hospital, pharmacist, etc.) and is generally not subject to the Privacy Rule under the Health Insurance Portability and Accountability Act, commonly known as HIPAA, which imposes additional requirements on healthcare providers relating to protected health information.

Consent

Your use of CareCompass is subject to this Privacy Policy, any referenced Legal Notice, and any referenced Terms of Use. By using CareCompass, You agree with the terms of this Privacy Policy in addition to any other posted policy found on the Site. Whenever You submit information to Us via CareCompass, You consent to the collection, use, disclosure and storage of Your personal 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 laws.

About children

Unless specifically stated, CareCompass is not intended for usage by persons under the age of 18. We encourage parents to talk to their children about their use of the Internet and the information they disclose via the Internet.

Personal information

“Personal information” means information that identifies You or could reasonably be used to identify You, and which is processed, including for hosting purposes, by UCB in an accessible form. Although the types of personal information We collect and share depend on the nature of Your relationship with UCB, 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 CareCompass or otherwise voluntarily share with Us. This includes:

• Profile information: Direct Identifiers such as Your first and last name, date of birth (optional), U.S. residency, phone number (optional), e-mail address, login (email address) and password.
• General information related to Your loved one: first and last name, date of birth.
• Health-related information about Your loved one: Diagnosis, date of diagnosis, profile, medications & allergies, Seizure Action Plan(s), journal & seizure log, daily routines, non-pharmacological treatment (incl. dietary, device, etc.), and any other information You’ll include (see below “Free-text fields").
• Caregiver's journal information: title, selection on an emotion scale, an open field and the option to upload a picture (all fields optional).
• Free-text fields (incl. personal preferences, other diagnosis, etc,): CareCompass includes a number of fields where You can include any information. We strongly recommend including only the necessary information and minimize data disclosure.
• Other categories of personal information may be collected from time to time and will be described wherever the request for personal information occurs.

Except for mandatory information You must provide Us, You may choose not to provide Your personal information to UCB, but in general, some information about You is required in order for You to interact with CareCompass and some functionalities won’t work as intended if You don’t provide such information.

Information collected automatically

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

Analytics information. CareCompass uses tools to measure traffic and how users interact with CareCompass.

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 CareCompass;
• to analyze and better understand Your needs, preferences, and interests and improve CareCompass;
• to resolve disputes or troubleshoot problems;
• to enforce our Terms of Use or Legal Notice;
• to conduct scientific research based on Your pseudonymized information and upon Your prior consent; 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 or share Your name, address, e-mail address, or any other personal information to another party for their own marketing use.

Disclosure of information

We will disclose Your personal information to other UCB affiliates worldwide. In addition, We will disclose Your personal information to a third party for a business purpose. For example, We will disclose Your personal information:

• to third-party service providers We use to provide You with CareCompass (e.g., hosting companies, and companies that provide business analytics, technical support);
• to trusted third-party businesses with which We partner to offer You products and services;
• to pharmaceutical industry regulators such as the U.S. Food and Drug Administration, and other regulators, 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 and/or its users;
• under circumstances We believe reasonably necessary to protect the personal safety of users of UCB, Inc.’s products and services, CareCompass or the public; or
• as is otherwise described in this Privacy Policy or at the point of collection.

We also may share aggregated and/or anonymized information with third parties, including research organizations. This information does not contain any personal information and is used to develop content and services We believe You will find of interest.

Protecting your personal information

UCB has adopted a number of recognized standards to protect the privacy, confidentiality and integrity of Your information, including, amongst others, the following:

• We restrict the access on a need-to-know basis and protect how Your personal information is used, limited to reasonable and legitimate business purposes.
• We restrict and protect how Your information is disclosed, limited to circumstances where there is a legitimate business need, and any further use or disclosure of Your personal information is protected by Our global 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 Your personal information confidential and secure, and to use Your personal information only in a limited manner and in accordance with applicable data protection laws and regulations.
• We use strong computer security protections. UCB and its technology partner has implemented technical, administrative and procedural safeguards in an effort to secure your personal information from unauthorized access, use or disclosure. Unfortunately, no such measure is ever 100 percent effective, so we do not guarantee that your personal information will be secure from theft, loss, or unauthorized access, use or disclosure, and we make no representation as to the reasonableness, efficacy, or appropriateness of the measures we use to safeguard your personal information.
• 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.

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

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 Websites;
• to review and update Your personal information by contacting Us at the link below and, if You have an online account on a Website, by logging into that account.

Access and deletion requests

If permitted by applicable laws, You have the right to request access to and to correct the personal information We have collected about You. In addition, You can request that Your personal information is available, in a portable and readily usable format, and that We delete Your personal information in accordance with applicable laws. Please submit Your request(s) using the address listed in the “How to Contact Us” section below.

Retention

We will only keep your Personal Information for so long We need in accordance with the usages defined above (“Use of information) or keep it in a form that does not permit identifying you when this information is no longer necessary for the purposes unless we are required by law to keep this information for a longer period.

California Consumer Privacy Act

The California Consumer Privacy Act of 2018 (as amended by the California Privacy Rights Act of 2020) (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 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 Your 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.

Links to other websites

CareCompass may contain links or references to other, non-UCB 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, CareCompass is intended for use only by U.S. residents. Any personal information You voluntarily share with UCB may be delivered to servers located in the United States or other countries. By using CareCompass, You acknowledge the transfer of any and all personal information that You provide to Us.

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 UCB, Inc., Attn: UCBCares, 1950 Lake Park Drive, Smyrna, GA 30080, or contact Us by email: (datasubjectrequests@ucb.com) or telephone (844-599-2273).

Changes to this privacy policy

Without prejudice to Your rights under applicable laws, 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.