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Privacy Policy

Effective/Last Revised: August 1, 2020

Kiniksa Pharmaceuticals, Ltd. (“Kiniksa,” “we” or “us”) respects the privacy rights of individuals with regard to their personal data. This Policy describes the categories of personal data we may collect from you and how we may collect, use, and share that data. 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 from you, please contact us as described under the heading “HOW TO CONTACT US”.


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 collect, use, store, transfer and share different categories of personal data about you depending on the nature of Kiniksa’s relationship with you and the requirements of applicable law, including the different categories of personal data set forth below, which we have grouped together as follows:


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:

User-Generated Information

You also may provide information to be used, published or displayed (hereinafter, “posted“) on public areas of our Websites, or to be transmitted to other users of our Websites (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 Websites, please be aware that no security measures are perfect or impenetrable.

Additionally, we cannot control the actions of other users of our Websites 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 website or intranet, we may automatically collect technical data about your equipment, browsing actions and patterns. We collect this data by using cookies and other similar technologies.

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

How We Respond to Do-Not-Track Signals

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.

Third Parties or Publicly Available Sources

We may receive 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:


We may use your personal data in order to:

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 regulatory monitoring and reporting obligations, including those related to adverse events, product complaints and patient safety.

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


We strive to provide you with choices regarding certain personal data uses, particularly around marketing and advertising, as well as receiving other information. We have established the following personal data control mechanisms:


We may share your personal data with other parties who we have grouped together as follows (for the purposes set forth under the heading “HOW WE MAY USE YOUR PERSONAL DATA”):

We require all third parties to respect the security of your personal data and to treat it in accordance with applicable law. We do not allow our third-party service providers to use your personal data for their own purposes and only permit them to process your personal data for specified purposes and in accordance with our instructions.


We have security measures designed to safeguard your personal data from being accidentally lost, used or accessed in an unauthorised 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 breach and will notify you and any applicable regulator of a breach where we are legally required to do so.


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.


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.


If you reside in California, please read this section for additional details about how we may collect, use, and disclose information about you, as well as your rights under the California Consumer Privacy Act (or “CCPA”) (California Civil Code Section 1798.100 et seq.).

We may collect information that identifies, relates to, describes, references, is capable of being associated with, or could reasonably be linked, directly or indirectly, with a particular person or device. Personal information does not include publicly available information from government records, de-identified or aggregated consumer information, and information excluded from the CCPA’s scope. For more information about the type of personal information we may have collected about you, please see the “PERSONAL DATA WE MAY COLLECT ABOUT YOU” section of this Policy. For more information about how we may use and share your information for business purposes, please see the “HOW WE MAY USE YOUR PERSONAL DATA” and “HOW WE MAY SHARE YOUR PERSONAL DATA” sections of this Policy. Please note that in the past 12 months, and currently, we do not sell your personal information.

The CCPA provides consumers (i.e., California residents) with specific rights (listed below and subsequently referred to as “California Privacy Rights”), subject to some limitations and the verification of their identity, regarding their personal information:

  1. Consumers have the right to request access to the specific pieces of personal information we have collected, disclosed or sold about them in the last 12 months, including the categories of information, sources and business purposes of collection, as well as the categories of third parties to whom we have disclosed or shared the personal information.
  2. Consumers have the right to request deletion of their personal information (subject to certain exceptions).
  3. Consumers have the right to opt-out of the sale of their personal information, though we do not sell personal information.
  4. Consumers have the right to receive equal service and price and not be discriminated against for exercising their privacy rights under the CCPA.

In order for us to process a request for you to exercise your California 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 California Privacy Rights on your behalf in accordance with the CCPA. 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 California 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 the CCPA and its regulations.

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.


If you have any questions about this Privacy Policy or concerns about our privacy practices, 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


Effective/Last Revised: July 10, 2020

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”) requires 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”). If you are a data subject within the EEA, this Supplemental European Privacy Policy applies to you in addition to the provisions above.


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

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/ActivityCategory of personal dataLawful basis for processing including basis of legitimate interest
To register you as a new customer, contractor or employee.(a) Identity(b) ContactPerformance 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) Identity(b) Contact(c) Financial(d) Transaction(e) Marketing and Communications(a) Performance of a contract with you(b) Necessary for our legitimate intereststo 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) Identity(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 intereststo keep our records updated;to study how customers use our products/services; andto administer our employee relationships
To enable you to complete a survey(a) Identity(b) Contact(c) Profile(d) Usage(e) Marketing and Communications(a) Performance of a contract with you(b) Necessary for our legitimate intereststo study how customers use our products/services; andto 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) Identity(b) Contact(c) Profile(d) Technical(e) Usage(a) Necessary for our legitimate interestsfor running our business and employee relationships;provision of administration and IT services, network security;to prevent fraud; andin 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) Identity(b) Contact(c) Profile(d) Usage(e) Marketing and Communications(f) TechnicalNecessary for our legitimate intereststo study how customers use our products/services;to develop them;to grow our business; andto inform our marketing strategy.
To use data analytics to improve our website, products/services, marketing, customer relationships and experiences(a) Technical(b) UsageNecessary for our legitimate intereststo define types of customers for our products and services;to keep our website updated and relevant;to develop our business; andto inform our marketing strategy.
To make suggestions and recommendations to you about goods or services that may be of interest to you(a) Identity(b) Contact(c) Technical(d) Usage(e) ProfileNecessary for our legitimate intereststo develop our products/services; andto 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) Identity(b) Contact(c) Financial(d) Special Categories (Health Data)Necessary for our legitimate intereststo improve healthcare; andto conduct and analyze the research study.Necessary for scientific research purposes


We undertake studies within the EEA 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 are 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 will 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).


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.


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 out of the EEA, 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 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.


Under certain circumstances, visitors from within the EEA have the following data protection rights:

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”. 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. 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.