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Privacy Policy

Effective/Last Revised: September 1, 2023

Kiniksa Pharmaceuticals, Ltd. (“Kiniksa,” “we” or “us”) respects the privacy rights of individuals with regard to their personal data. This Policy describes how we may collect, use, and share personal data about you:

• When you use our websites (www.kiniksa.com or any website that links to this Policy), mobile applications, online services, or otherwise interact with us online (“Online Services”);
   
• If you are in or interested in a clinical trial or otherwise involved in our research or patient support programs;
   
• If you are a healthcare professional or researcher who works with us or would like to work with us;
   
• When you apply for or receive a charitable donation, grant, or sponsorship from us;
   
• When you attend one of our events, contact customer services, or otherwise interact with us;
   
• When you interact with us in an employment context, such as if you are an employee or applicant for employment;
   
• When you interact with us in a commercial context, such as if you are employed by one of our vendors or a business partner; and
   
• In other situations in which this Policy is provided.
   

It also describes our privacy practices to safeguard your personal data in compliance with applicable data protection laws.

Please read this Privacy Policy carefully to understand our privacy practices with respect to your personal data and how you can manage it.

If you have any questions concerning Kiniksa’s privacy practices or wish to access or correct personal data that Kiniksa has collected about you, please contact us as described under the heading “HOW TO CONTACT US”.
 

PRIVACY POLICY UPDATES

Kiniksa may update this Policy from time to time, in which case we will post an updated Policy with a revised effective date. We encourage you to review this page periodically for the latest information about our privacy practices. We may also notify you of updates in accordance with applicable law.
 

PERSONAL DATA WE MAY COLLECT ABOUT YOU

We may collect, use, store, transfer and disclose to third parties different categories of personal data about you depending on the nature of Kiniksa’s relationship with you and the requirements of applicable law. The categories of personal data we may collect are:

• Identifiers. Such as your first name, maiden name, last name, username or similar identifier, Internet Protocol address, title, date of birth, and government provided identifiers which may include Special or Sensitive Categories of Personal Data as defined below.
   
• Contact Information. Such as your billing address, delivery address, email address and telephone numbers.
   
• Commercial Information. Such as the types of information requested, purchases or orders made by you, details about your transactions with us, and feedback and survey responses.
   
• Internet or Other Electronic Network Activity (“Technical and Usage”) Information. Such as information about your interactions with our Online Services, geolocation data, internet protocol (“IP”) address, browser type and version, time zone setting and location, browser plug-in types and versions, operating system and platform and other technology on the devices you use to access our Online Services.
   
• Demographic Information. Information which may include protected characteristics under U.S. state or Federal law, such as age, gender, marital status, or disability status.
   
• Marketing and Communications Data. Such as your preferences in receiving product, program, marketing or other information and your communication preferences.
   
• Audio, Electronic, Visual, or Similar Information. Such as CCTV or call recordings if you contact us by telephone.
   
• Financial Data. Such as your bank account, payment card details, insurance information and payroll data.
   
• Professional or Employment-Related Information. Such as the name of your employer, business contact information, and employment history.
   
• Education Information. Such as colleges or universities attended, and degrees earned.
   
• Inferences Drawn from the Personal Data Described Above. Such as your preferences or characteristics.
   
• Special or Sensitive Categories of Personal Data. Such as Social Security, driver’s license, or state identification number; account login information; details about your race or ethnicity; information about your health (including health-related personal data that Kiniksa or its agent may use to determine your eligibility for clinical research or to conduct a clinical trial); and genetic and biometric data.
   

HOW WE MAY COLLECT INFORMATION ABOUT YOU

We collect personal data from the following categories of sources:

Direct Interactions

You may give us your identity, contact and financial data by filling in forms or by corresponding with us by mail, phone, and e-mail or otherwise. This includes personal data you provide when you:

• create an account on our website;
   
• subscribe to our e-mail notifications, services, or publications;
   
• request scientific, product, program or marketing materials to be sent to you;
   
• enter information into a survey;
   
• provides us with feedback;
   
• provide unsolicited information to us; 
   
• seek to do business with us;
   
• apply for employment with us or when you are employed by us; or
   
• express interest in participating in our clinical trials or other studies and research programs.
   

User-Generated Information

You also may provide information to be used, published or displayed (hereinafter, “posted”) on public areas of our Online Services, or to be transmitted to other users of our Online Services (collectively, “User-Generated Information”). When you provide User-Generated Information, you do so at your own risk.

Although in some cases you may be able to establish certain privacy settings for your User-Generated Information that is posted on our Online Services, please be aware that no security measures are perfect or impenetrable.

Additionally, we cannot control the actions of other users of our Online Services with whom you may choose to share your User-Generated Information. Therefore, we cannot and do not guarantee that your User-Generated Information will not be viewed by unauthorized persons.
 

Automated Interactions

As you interact with our Online Services, we may automatically collect data about your Internet or other electronic network activity, including information about your equipment, browsing actions and patterns. We collect this data by using cookies and other similar technologies.

• Cookies. Cookies are small text files that are placed on your computer or mobile device in order to identify your web browser and the activities of your computer or mobile device when using our website. Cookies are used to personalize your experience, to assist you in using the website (such as saving time by not having to re-enter your name each time you use the website), and to allow us to statistically monitor how you are using the website to help us improve our products and services.
   
• Action Tags. Action tags, also known as web beacons or gif tags, are a web technology used to help track usage information, such as how many times a specific page on a website has been viewed. Action tags are invisible to you, and accessing any online service, including advertisements, from the Online Services may result in the creation of action tags.
   

You do not have to accept cookies to use our website. Although browsers may be initially set to accept cookies, you may reset your browser to notify you when you receive a cookie or to reject cookies generally. Most browsers offer instructions on how to do so in the “Help” section of the toolbar. However, if you reject cookies, certain features or resources of the Online Services may not work properly and you may experience some loss of convenience. To find out more about cookies, including how to see what cookies have been set and how to manage and delete them, visit www.aboutcookies.org or www.allaboutcookies.org .

Some web browsers may transmit “do-not-track” signals to websites with which the browser communicates. Websites linked to this Privacy Policy do not currently respond to these “do-not-track” signals.

By using cookies and action tags together, we are able to gain valuable information to improve our Online Services and other services and to measure the effectiveness of our marketing efforts.
 

Third Parties or Publicly Available Sources

We may collect different categories of personal data about you (as described under the heading “PERSONAL DATA WE MAY COLLECT ABOUT YOU”) from various third parties and public sources, including as set forth below:

• Internet or other electronic network activity data from analytics providers such as Adobe, Google, advertising networks and search information providers;
   
• Contact, financial, and commercial data from providers of technical, payment, and delivery services;
   
• Identifiers and contact information from data brokers, aggregators or recruitment agencies;
   
• Identifiers and contact information from publicly availably sources; and
   
• Special or sensitive categories of data including health data from entities such as those assisting us with our clinical trials and other studies and research programs.
   

HOW WE MAY USE YOUR PERSONAL DATA

We may use your personal data:

• To operate our business;
   
• To deliver information, products and services, including Online Services;
   
• To process, complete and fulfill your requests and transactions;
   
• To communicate with you;
   
• To maintain or service accounts;
   
• To provide customer service and respond to your inquiries;
   
• To screen for clinical trials or other studies and research program eligibility;
   
• To conduct scientific and market research and publish related results;
   
• To tailor our research, programs and marketing campaigns;
   
• To maintain and improve our Online Services, including debugging to identify and repair errors;
   
• To help ensure the security and integrity of our data, systems, and Online Services;
   
• To verify and maintain the quality and safety of our services;
   
• For advertising and marketing purposes;
   
• To evaluate your application for employment and fulfill our duties as an employer;
   
• In the context of commercial relationships with our business contacts, partners, and third parties that provide services to us;
   
• To provide you with newsletters, articles, alerts, announcements, invitations, and other information about science, research, products, brands, health topics and disease states;
   
• To comply with lawful requests and legal process, including to respond to requests from public and government authorities; enforce this Policy and our other terms and conditions; and protect our rights, privacy, safety or property, and/or that of you or others; and
   
• As described under the heading “HOW WE MAY DISCLOSE YOUR PERSONAL DATA”.
   

We also may use your personal data for data analysis, to better understand how our products and services impact you and those you care for, to track and respond to concerns, for fraud prevention and to further develop and improve our research, programs, products and services. In addition, we may use the information you provide to comply with our legal obligations, including regulatory monitoring and reporting obligations, such as those related to adverse events, product complaints and patient safety.

For U.S. residents, please see the “SUPPLEMENTAL U.S. PRIVACY POLICY” for additional information.

For those visiting this website that provide personal data from within the European Economic Area or the United Kingdom, please see the “SUPPLEMENTAL EUROPEAN AND UK PRIVACY POLICY” for additional information.
 

HOW WE MAY DISCLOSE YOUR PERSONAL DATA

We may disclose your personal data to the following categories of third parties (for the purposes set forth under the heading “HOW WE MAY USE YOUR PERSONAL DATA”):

• Internal Parties. Such as other subsidiaries, affiliates or departments within the broader Kiniksa organization that provide services to other parts of the organization, or for information technology and system administration services, or who undertake reporting.
   
• External Third Parties. Such as service providers that provide information technology and system administration services and data analytics, or third parties who provide services to support a clinical trial or other study or research program sponsored by Kiniksa, or marketing activities as described under “MARKETING AND OTHER INFORMATION”.
   
• Other Third Parties. Such as third parties in connection with the potential sale or transfer of all or a portion of our business or assets or with whom we may choose to merge, or from whom we may seek to acquire all or a portion of their business or assets. If a such change happens to our business and results in a change in ownership of all or a portion of such business or assets, the new owners may use your personal data as set out in this Policy.
   
• Professional Advisors. Such as advisors (e.g., lawyers, bankers, auditors and insurers) who provide advisory and related services to us, including consultancy, banking, legal, accounting, insurance, and payroll services.
   
• Courts, Regulators, or Government Authorities. Such as revenue and customs, Internal Revenue Service (“IRS”), U.S. Food and Drug Administration (“FDA”), state and federal regulators and other authorities who require reporting of processing activities or data in certain circumstances.
   

We do not allow our third-party service providers to use your personal data without explicate permission to process your personal data and in accordance with our instructions.
 

MARKETING AND OTHER INFORMATION

We strive to provide you with choices regarding certain personal data uses. We have established the following control mechanisms:

• Scientific, Medical, Program and Marketing Materials. We may use your identifiers, contact information, commercial information, and demographic data to form a view on what we believe you may want or need, or what may be of interest to you. This helps us to decide which programs, products, services, information and promotional efforts may be relevant for you.
   
• Opting-In. You will only receive certain scientific, medical, program or marketing communications from us if you have requested this information from us or you have opted-in to receiving these communications.
   
• Opting-Out. You can ask us or third parties who we control to stop sending you scientific, medical, program or marketing communications at any time by following the opt-out links on any marketing message sent to you. By opting-out of the communications, it will not affect the personal data collected for purposes of products or services purchased, warranty information, product or service experience, or other transactions. To opt out of targeted digital advertising, please contact us as described under the heading “HOW TO CONTACT US”.
   

PERSONAL DATA COLLECTED BY THIRD PARTIES

Some content or applications on the Online Services may be provided by third parties, including analytics companies, advertising networks, and application providers. These third parties may use cookies or other tracking technologies to collect personal data about you when you use our Online Services for purposes such as to conduct analytics and may track your online activities over time and across different websites when you use the Online Services. For example, we use Google Analytics to evaluate website traffic and usage data to help us improve our products and services. For more information about how Google collects and processes data visit https://policies.google.com/technologies/partner-sites. For more information about how to opt out of having your information used by Google Analytics, visit https://tools.google.com/dlpage/gaoptout/.
 

HOW WE SECURE YOUR PERSONAL DATA

We have security measures designed to safeguard your personal data from being accidentally lost, used or accessed in an unauthorized way, altered or disclosed. We limit access to your personal data to those employees, agents, contractors and other third parties that have a business need to know such information and are subject to a duty of confidentiality. Such employees, agents, contractors and other third parties may only process your personal data for specified purposes in accordance with our instructions.

We have procedures with respect to suspected personal data breaches and will notify you and any applicable regulator of a breach where we are legally required to do so.
 

CHILDREN

We do not knowingly solicit data from, or market to, children and do not collect personal data about children, except in certain instances with the express consent of a parent or legal guardian. If a parent or legal guardian becomes aware that his or her child has provided us with personal data, he or she should contact us as described under the heading “HOW TO CONTACT US”. We will take reasonable steps to delete such data from our database within a reasonable time.
 

LINKS TO OTHER SITES

This Policy does not address, and Kiniksa is not responsible for the terms of use, information or privacy practices of any other websites or online services not owned or operated by Kiniksa, including any such sites or services to which our Kiniksa website links. The inclusion of a link on the Kiniksa website does not imply our endorsement of the linked site or service.
 

SUPPLEMENTAL U.S. PRIVACY POLICY

If you reside in the U.S., please read this section for additional details about how we may collect, use, and disclose information about you, as well as rights you may have under state law.
 

HOW AND WHY WE COLLECT YOUR PERSONAL DATA

For information about the categories of personal data we may have collected about you, please see the “PERSONAL DATA WE MAY COLLECT ABOUT YOU” section of this Policy.

For information about the business and commercial purposes for which we may use your personal data, please see the “HOW WE MAY USE YOUR PERSONAL DATA” section of this Policy.

We may collect and use sensitive personal data for the following purposes:

• Where required for the provision of our services, including as related to research and clinical trials, for identity verification, maintaining or servicing accounts, providing customer service, or processing transactions;
   
• To fulfill our obligations as an employer, including to administer payroll or comply with our legal obligations;
   
• To prevent, detect, and investigate security incidents that compromise the availability, authenticity, or confidentiality of personal data;
   
• To resist malicious, deceptive, fraudulent, or illegal actions directed at Kiniksa (e.g., to detect fraud or potential identity theft) and to prosecute those responsible for those actions;
   
• To verify or maintain the quality or safety of the products or services that we offer; and
   
• For other purposes that do not involve inferring characteristics about individuals, such as to comply with our legal obligations or respond to requests from law enforcement.
   

Kiniksa does not process sensitive personal data for the purpose of inferring characteristics about individuals.
 

HOW DISCLOSE, SELL, OR SHARE YOUR PERSONAL DATA

For information about the business and commercial purposes for which we may disclose your personal data to third parties, please see the “HOW WE MAY USE YOUR PERSONAL DATA” and “HOW WE MAY DISCLOSE YOUR PERSONAL DATA” sections of this Policy.

Below we describe, for each category of personal data that we collect, the categories of third parties to which we have disclosed that category of personal data for business purposes and the categories of third parties to which we have sold or shared personal information.
 

Categories of personal data collected	Category of personal data (as described in the “Personal Data We May Collect About You” section)
Identifiers	Kiniksa Pharmaceuticals, Ltd. subsidiary companies; service providers
Contact information	Kiniksa Pharmaceuticals, Ltd. subsidiary companies; service providers
Commercial information	Kiniksa Pharmaceuticals, Ltd. subsidiary companies; service providers
Internet or other electronic network activity information	Kiniksa Pharmaceuticals, Ltd. subsidiary companies; service providers
Biometric data	Kiniksa Pharmaceuticals, Ltd. subsidiary companies; service providers
Demographic information	Kiniksa Pharmaceuticals, Ltd. subsidiary companies; service providers
Marketing and communications data	Kiniksa Pharmaceuticals, Ltd. subsidiary companies; service providers
Audio, electronic, visual, or similar information	Kiniksa Pharmaceuticals, Ltd. subsidiary companies; service providers
Financial data	Kiniksa Pharmaceuticals, Ltd. subsidiary companies; service providers
Professional or employment-related information	Kiniksa Pharmaceuticals, Ltd. subsidiary companies; service providers
Education information	Kiniksa Pharmaceuticals, Ltd. subsidiary companies; service providers
Inferences drawn from categories of personal data described above	Kiniksa Pharmaceuticals, Ltd. subsidiary companies; service providers
Sensitive personal data	Kiniksa Pharmaceuticals, Ltd. subsidiary companies; service providers

Kiniksa does not knowingly sell or share the personal data of children under 16 years of age to third parties without appropriate consents provided.
 

HOW LONG WE RETAIN YOUR PERSONAL DATA

We will only retain your personal data for as long as necessary to fulfil the purposes we collected it for, including for the purposes 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 of harm from unauthorized use or disclosure of your personal data, the purposes for which we process your personal data and whether we can achieve those purposes through other means, and the applicable legal requirements.

In some circumstances we may deidentify 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. We will not attempt to re-identify deidentified data.
 

PRIVACY RIGHTS

Depending on where you reside, you may have certain rights relating to your personal data (listed below and subsequently referred to as “Privacy Rights”), subject to some limitations and the verification of their identity, regarding their personal data:

1. Right to Know. Consumers may have the right to confirm that we have collected personal data about you and know what personal data we have collected about them, including as applicable, the categories of personal data we have collected, the sources from which we collected that personal data, the business or commercial purposes for which we collected, sold, or shared that personal data, the categories of personal data we sold, shared, or disclosed to third parties for business purposes, as well as the categories of third parties to whom we have disclosed, sold, or shared the personal data.
    
2. Right to Access. Consumers may have the right to request a copy of the specific pieces of personal data that Kiniksa has collected about them in a portable and, to the extent technically feasible, readily usable format.
    
3. Right to Request Correction. Consumers may have the right to request that we correct inaccurate information that we process about them.
    
4. Right to Request Deletion. Consumers may have the right to request deletion of their personal data (subject to certain exceptions).
    
5. Right to Opt-Out of Sales, Sharing and Targeted Advertising. Consumers may have the right to opt-out of the sale of their personal data or the use or sharing of their personal data for targeted advertising.
    
6. Right to Opt-Out of Profiling. Consumers may have the right to opt-out of profiling in furtherance of decisions that produce legal or similarly significant effects.
    
7. Right to Be Free from Discrimination. Consumers may have the right to receive equal service and price and not be discriminated against for exercising their privacy rights under the California Consumer Privacy Act (“CCPA”).
    

In order for us to process a request for you to exercise your Privacy Rights, we will first verify your identity. Please submit your requests by contacting us pursuant to the “HOW TO CONTACT US” section of this Policy.

You may designate an authorized agent to exercise your Privacy Rights on your behalf. Authorized agents may submit requests by contacting us pursuant to the “HOW TO CONTACT US” section of this Policy. We may require that you provide the authorized agent with written permission to act on your behalf and that the authorized agent verify his or her identity directly with us. 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 that the request warrants a fee, we will tell you why we made that decision and provide you with a cost estimate before completing your request. When you submit a request to exercise your Privacy Rights, we will do our best to respond to your request as soon as possible, and, in any event, in accordance with the timeframes established by applicable law.

California Civil Code Section 1798.83 permits California residents who are individual customers of Kiniksa products to request certain information regarding its disclosure of personal data to third parties for their direct marketing purposes. To make such a request, please contact us as described under the heading “HOW TO CONTACT US”.

Be sure to include your name and address. You can include your email address if you want to receive a response by email. Otherwise, we will respond by postal mail within the time required by law.
 

HOW TO CONTACT US

If you have any questions about this Privacy Policy or concerns about our privacy practices, or would like to appeal a decision made in response to your request to exercise your Privacy Rights, please contact us at:

Kiniksa Pharmaceuticals
Attention: Data Protection Officer
100 Hayden Ave
Lexington, MA 02421
Phone: +1-781-431-9100
Email: privacy@kiniksa.com
 

SUPPLEMENTAL EUROPEAN AND UK PRIVACY POLICY

European Union Regulation 2016/679 of April 27, 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data (the “General Data Protection Regulation” or “GDPR”) and United Kingdom (“UK”) data protection laws, including the UK Data Protection Act, require Kiniksa as the data controller to provide additional and different information about its data processing practices to data subjects in the European Economic Area (“EEA”) and UK. If you are a data subject within the EEA or UK, this Supplemental European and UK Privacy Policy applies to you in addition to the provisions above.
 

HOW WE USE YOUR PERSONAL DATA

We will only use your personal data when the law allows us to so. Most commonly, we will use your personal data in the following circumstances:

• We need to perform the contract we are about to enter into or have entered into with you.
   
• It is necessary for our legitimate interests (or those of a third party) and your interests and fundamental rights do not override those interests.
   
• We need to comply with a legal or regulatory obligation.
   
• It is necessary for scientific research purposes.
   

We may also use your personal data in the following situations, which are likely to be rare:

• We need to protect your interests (or someone else’s interests).
   
• It is needed in the public interest or for official purposes.
   

We may also rely on consent as a legal basis for processing your personal data in certain circumstances, like sending direct marketing communications to you via email or text message. You have the right to withdraw consent to marketing at any time by contacting us.

We have set out below, in a table format, a description of many of the ways we plan to use your personal data, and which of the legal bases we rely on to do so. We have also identified what our legitimate interests are where appropriate.

Note that we may process your personal data for more than one lawful ground depending on the specific purpose for which we are using your data. Please contact us if you need additional details about the specific legal ground we are relying on to process your personal data.
 

Purpose/Activity	Category of personal data (as described in the “Personal Data We May Collect About You” section)	Lawful basis for processing including, as applicable, basis of legitimate interest
To register you as a new customer, contractor or employee	(a) Identity (b) Contact	Performance of a contract with you
To process and deliver your service or product including: (a) Manage payments, fees and charges (b) Collect and recover money owed to us	(a) Identifiers (b) Contact (c) Financial (d) Transaction (e) Marketing and Communications	(a) Performance of a contract with you (b) Necessary for our legitimate interests to recover debts due to us
To manage our relationship with you which will include: (a) Notifying you about changes to our terms or privacy policy (b) Asking you to provide feedback or take a survey (c) As an employee	(a) Identifiers (b) Contact (c) Profile (d) Usage (e) Marketing and Communications (f) Financial	(a) Performance of a contract with you (b) Necessary to comply with a legal obligation (c) Necessary for our legitimate interests to keep our records updated; to study how customers use our products/services; and to administer our employee relationships
To enable you to complete a survey	(a) Identifiers (b) Contact (c) Profile (d) Usage (e) Marketing and Communications	(a) Performance of a contract with you (b) Necessary for our legitimate interests to study how customers use our products/services; and to develop them and grow our business
To administer and protect our business and our intranet and website (including troubleshooting, data analysis, testing, system maintenance, support, reporting and hosting of data)	(a) Identifiers (b) Contact (c) Profile (d) Technical (e) Usage	(a) Necessary for our legitimate interests for running our business and employee relationships; provision of administration and IT services, network security; to prevent fraud; and in the context of a business reorganisation or group restructuring exercise (b) Necessary to comply with a legal obligation
To deliver relevant website content and advertisements to you and measure or understand the effectiveness of the advertising we serve to you	(a) Identifiers (b) Contact (c) Profile (d) Usage (e) Marketing and Communications (f) Technical	Necessary for our legitimate interests to study how customers use our products/services; to develop them; to grow our business; and to inform our marketing strategy
To use data analytics to improve our website, products/services, marketing, customer relationships and experiences	(a) Technical (b) Usage	Necessary for our legitimate interests to define types of customers for our products and services; to keep our website updated and relevant; to develop our business; and to inform our marketing strategy
To make suggestions and recommendations to you about goods or services that may be of interest to you	(a) Identifiers (b) Contact (c) Technical (d) Usage (e) Profile	Consent (if legally required) or necessity for our legitimate interests to develop our products/services; and to grow our business
To screen you for clinical study eligibility	(a) Identity (b) Contact (c) Special Categories (Health Data)	Consent
To conduct a clinical study	(a) Identifiers (b) Contact (c) Financial (d) Special Categories (Health Data)	Consent (if legally required) or necessity for our legitimate interests to improve healthcare; and to conduct and analyze the research study. Necessary for scientific research purposes

CLINICAL TRIAL DATA

We undertake studies within the EEA and UK and we will use information from subjects’ medical records and other health data in order to improve healthcare. We may use third parties to perform some services related to our clinical trials, including operating a screening website to determine whether interested individuals are eligible to participate in a clinical study sponsored by Kiniksa. Whenever a person interested in participating in a clinical study uses one of these services, we will collect the necessary information after providing additional details about how we will process his/her data and obtain that person’s express consent, as necessary. A person can choose at any time not to provide the information requested by the screening website but this may prevent him/her from continuing to use these services.

If a person is determined to be eligible for a clinical study and decides to participate, important information (contained in what is known as an informed consent form) is reviewed with each patient by a study professional at the study site. Each patient must read and sign this informed consent form, which describes possible health risks and possible benefits of participating in the study, as well as what personal data will be collected in the study and who is able to use or disclose any personal information, before enrolling. Anyone can decline/unenroll to participate in a study at any time.

As a biopharmaceutical organisation we have a legitimate interest in using information relating to your health for research studies when you agree to take part in a research study. Our exception to the general principle not to process special categories of data is that processing is necessary for scientific research purposes. This means that we will use your health data that we collect during a research study when we act as the data controller for such studies in the ways needed to conduct and analyse the research study. Your rights to access, change or move your information may be limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we may keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personal data necessary to achieve our purpose(s).
 

CHANGE OF PURPOSE

We will only use your personal data for the purposes for which we collected it, unless we reasonably consider that we need to use it for another reason and that reason is compatible with the original purpose.

If we need to use your personal data for an unrelated purpose, we will notify you and we will explain the new legal basis.

Please note that we may process your personal data without your knowledge or consent, in compliance with the above rules, where this is required or permitted by law.
 

INTERNATIONAL TRANSFERS OF PERSONAL DATA

We are based outside the European Economic Area, so the processing of your personal data may involve a transfer of data outside the EEA. Information on how to contact the us can be found under the heading “HOW TO CONTACT US”.

Whenever we transfer your personal data to recipients located outside of the EEA or UK, we ensure a similar degree of protection is afforded to it by ensuring at least one of the following safeguards is implemented:

• We will only transfer your personal data to countries that have been deemed to provide an adequate level of protection for personal data by the European Commission.
   
• If we transfer your personal data to countries which do not benefit from an adequacy decision of the European Commission we have put in place appropriate safeguards that ensure that your data will be adequately protected at the level of data protection in the EEA/UK, e.g., by entering into EU Standard Contractual Clauses approved by European Commission, and, where necessary, by implementing supplementary safeguards.
   

HOW LONG WE RETAIN YOUR PERSONAL DATA

We will only retain your personal data for as long as necessary to fulfil the purposes we collected it for, including for the purposes 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 of harm from unauthorised use or disclosure of your personal data, the purposes for which we process your personal data and whether we can achieve those purposes through other means, and the applicable legal requirements.

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.
 

YOUR DATA PROTECTION RIGHTS

Subject to and in accordance with European/UK data protection laws, you may have the following data protection rights:

• access to your personal data;
   
• rectification of your personal data;
   
• erasure of your personal data;
   
• object to processing of your personal data;
   
• restrict of processing your personal data;
   
• receive your personal data in a structured, commonly used and machine-readable format and the right to transmit or have transmitted those data to another controller;
   
• not to be subject to a decision based solely on automated processing (such automated decision making does not take place); and
   
• withdraw consent to any consent that you have previously given.
   

If you wish to exercise any of the rights set out above, information on how to contact the us can be found under the heading “HOW TO CONTACT US”. If you are a data subject in the EEA, you can also contact the Supervisory Authority in the country of your residence within the EU at this link for advice or to make a complaint. If you are a data subject in the UK, you can contact the Information Commissioner’s Office (“ICO”). Please be aware that your rights in relation to clinical research data may be limited.

You will not have to pay a fee to access your personal data (or to exercise any of the other rights). However, we may charge a reasonable fee or refuse to comply with your request if it is clearly unfounded, repetitive or excessive.

We may need to request specific information from you to help us confirm your identity and ensure your right to access your personal data (or to exercise any of your other rights). This is a security measure to ensure that personal data is not disclosed to any person who has no right to receive it. We may also contact you to ask you for further information in relation to your request to speed up our response.

We try to respond to all legitimate requests within one month. Occasionally it may take us longer than a month if your request is particularly complex or you have made a number of requests. In this case, we will notify you and keep you updated.