Privacy Policy

Karyopharm Therapeutics Inc. (“Karyopharm,” “we,” and “our”) respects the privacy of visitors to our website and recognizes your need for appropriate protection and management of the personally identifiable information (also referred to as personal data or personal information) you share with us.

This Privacy Policy (“Privacy Policy”) and Notice of Information Practices sets forth Karyopharm’s practices, as the controller of this website, regarding the collection, use and disclosure of personally identifiable information that you may provide through this website and other sites and pages that link to this Privacy Policy (collectively, “website”). Please read this entire Privacy Policy before using this website or submitting information to Karyopharm through this website. By using this website, and submitting information through this website to Karyopharm, you indicate acknowledgement of receipt of the notice below.

Policies 

Privacy Policy and Notice of Information Practices

How to Contact Us

Supplemental European Privacy Notice

California Privacy Notice

Medidata Patient Cloud Mobile Application Privacy Policy

KaryoMPN Mobile Application Privacy Policy

KaryoMeter Mobile Application Privacy Policy

KaryoThrive Privacy Policy

Privacy Policy and Notice of Information Practices

Data Collection: Karyopharm only collects personally identifiable data (such as your name, address, telephone number, email address, title, and website visit information) when you voluntarily submit it to Karyopharm, or explicitly consent to its collection.

Purposes of Processing: Karyopharm processes personally identifiable information on the website in the following ways:

  • We will process information voluntarily submitted to us, such as your name, contact information, interests, and role, in order to contact you to obtain more information, provide you with information that you have requested, or provide additional information which Karyopharm believes may be of interest to you.
  • We may automatically collect information about your use of this website in order to understand how the website is used and how you interact with our website in order to tailor and improve this website.

Data Sharing: Personally identifiable information about you, which is collected from this website, may be shared with third parties acting as agents of Karyopharm, as well as other entities as permitted by applicable law. 

Third-party service providers may also act on our behalf to collect and use data that assists in the hosting, maintenance, and improvement of this website. This website is hosted and maintained within the United States.

Karyopharm and its agents may exchange such information with each other or with you for the purposes of carrying out the activities described above.

Retention: Karyopharm will store and maintain your Personal Data for as long as necessary (i) for the purposes for which it was collected, (ii) to meet its current and future legal obligations, and (iii) as permitted to meet its legitimate interests. Please note that you may have the right to request the correction or deletion of your Personal Data as explained below and as required by applicable law.

Data Security and Protection: While Karyopharm makes reasonable efforts to protect the information collected through this website, please be aware that there is always some risk involved when submitting data over the Internet. We cannot guarantee that our website is 100% safe from illegal tampering or “hacking,” as any data transmitted over the Internet may be at risk. 

Links to Third Party Websites: As a convenience to our visitors, our website may contain links to a number of other non-Karyopharm websites that we believe may offer useful information. Those websites have their own privacy policies, and the privacy policy presented here does not apply to those websites. You should contact those websites directly for information on their privacy policies, confidentiality agreements, and data collection/distribution procedures.

Children’s Policy: We are committed to protecting the privacy of children. Our website is not intended for use by, or designed to attract, children under the age of 16. As noted above, we do not collect personally identifiable information unless you provide it to us – including an individual’s age. If at any time we are informed that a visitor under the age of 16 has submitted information to us through this website, we will endeavor to delete the information.

Cookies: Our website uses both “persistent” and “non-persistent” cookies and related technologies (“cookies”), which are small data files that a server sends or technology that is stored on your browser device, or the page you are viewing when you access a website. We use “non-persistent cookies” to provide you with the best presentation of our content as you navigate our website. Some of these “non-persistent cookies” are considered essential to the functioning of the website and are automatically deleted when you close your web browser.

We use “persistent cookies” to track page visits and how you interact with our website, including pages visited and links clicked, in order to help us analyze our website usage more accurately and tailor your experience. Web browsers may offer users of our websites the ability to disable receiving certain types of cookies; however, if cookies are disabled, some features or functionality of our websites may not function correctly. The “help” menu on most internet browsers contains information on how to disable cookies, or you can visit http://aboutcookies.com/.

We use analytical cookies such as Google Analytics to help us analyze how visitors use the website. The tool uses cookies to collect standard Internet log information and visitor behavior information. The information generated by the cookie about your use of this website, including your IP address, is transmitted to such providers. This information is then used to evaluate visitors’ use of the website and to compile statistical reports on website activity for us. We do not seek to link an IP address with the identity of a computer user. If you do not want any information to be collected and used by Google Analytics, you can install an opt-out add-on in your web browser. Google’s ability to use and share information collected by Google Analytics about your visits to this website is restricted by the Google Analytics Terms of Service and the Google Privacy Policy.

Please note that linked, non-Karyopharm websites may also use cookies. Karyopharm cannot control the use of cookies by these non-Karyopharm websites. We also want you to know that when you link from a Karyopharm website to another website, that website may have the ability to recognize that you have come from a Karyopharm website. If you do not want any other websites to know that you have been on this website, we recommend that you do not use the links provided in our website.

Please note that our website does not respond to “Do Not Track” signals at this time. 

Accuracy of Personally Identifiable Information: While we take various steps to ensure the accuracy and completeness of your information, we rely upon you to provide accurate and complete information when interacting with us.

Your California Privacy Rights: If you are a California resident, the California Consumer Privacy Act and the California Privacy Rights Act (collectively, the “CCPA”) provide you with certain rights regarding your personal information. Visit the California Privacy Notice Section to learn more about these rights. 

EEA and UK Residents: If you are a resident of the EEA or the UK, please review the Supplemental European Privacy Notice Section for additional rights that may apply to you, including with regard to how we might transfer your personal information to other jurisdictions.

Your Rights in Connection with Your Personally Identifiable Information: Depending on your jurisdiction, you may have the right to:

  • Request access to your personally identifiable information. This enables you to receive a copy of the personally identifiable information we hold about you.
  • Request correction of any incomplete or inaccurate personally identifiable information that we hold about you.
  • Request erasure of your personally identifiable information when there is no need for us to continue processing it, or you have exercised your right to object to processing (see below).
  • Object to processing of your personally identifiable information where we are relying on a legitimate interest (or those of a third party), and there is something about your particular situation which makes you want to object to processing on this ground.
  • Opt-out of the processing of your personally identifiable information (such as the sale or sharing of your information or the use of your personal information for targeted advertising purposes)
  • Request the transfer of your personally identifiable information to another party.

If you want to exercise any of these rights, please email us at privacy@karyopharm.com. We may validate your identity prior to complying with your request by comparing the information you provide with what we have on file. We will comply with all valid requests in the time period required under applicable law.

Privacy Policy Updates: Karyopharm may, at any time, revise this Privacy Policy by updating this posting. Data will be handled in accordance with the policy in effect at the time the data is collected.

How to Contact Us 

If you have any questions, inquiries, or complaints about this Privacy Policy or wish to exercise any individual rights permitted by applicable law, please contact Karyopharm at: privacy@karyopharm.com or by regular mail addressed to:

Karyopharm Therapeutics Inc.
Attn: General Counsel
85 Wells Ave., 2nd floor
Newton, MA 02459 USA

For EU individuals, any inquiries or complaints may also be addressed to our subsidiary located in Germany, by regular mail sent to:

Karyopharm Europe GmbH
Attn: Managing Director
Franziska-Bilek-Weg
80339 München

If you wish to contact our Data Protection Officer, please email sar@thedpo.co.uk

Supplemental European Privacy Notice

Date Last Updated: January 1, 2023

European Union Regulation 2016/679 of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data (“EU GDPR”) and the Data Protection Act 2018 in the United Kingdom of Great Britain (UK) requires us as the data controller to provide additional and different information about our data processing practices to data subjects located in the European Economic Area (“EEA”) and the UK.  If you are a data subject located within the EEA or the UK, this Supplemental European Privacy Notice applies to you in addition to any other information we provide regarding data privacy.

How We Use Your Personal Data

We (Karyopharm Therapeutics Inc.) will only use your personal data when applicable law allows us to do so.  Most commonly, we will use your personal data in the following circumstances:

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

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

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

Generally, we do not rely on consent as a legal basis for processing your personal data other than in relation conduction clinical studies in certain countries in mainland Europe.  

We have set out below, in a table format, a description of all 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 basis depending on the specific purpose for which we are using your data. 

Purpose/ActivityCategory of personal dataLawful basis for processing including basis of legitimate interest
To register you as a new client, contractor or employee.(a) Identity  (b) ContactPerformance of a contract with you
To process and deliver your service or order 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 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 leave a review 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 interests  to keep our records updated,  to study how customers and clients use our products/services; and  to 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 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) Identity (b) Contact (c) Profile (d) Technical (e) Usage(a) Necessary for our legitimate interests for running our business and employee relationship,  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) Identity  (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) Identity  (b) Contact  (c) Technical  (d) Usage  (e) Profile Necessary for our legitimate interests to develop our products/services; and,  to grow our business)
To conduct a research program(a) Identity  (b) Contact  (c) Financial  (d) Special Categories (Health Data) Consent (in some countries within mainland Europe) Necessary for our legitimate interests (in the United Kingdom and some countries within mainland Europe) to improve healthcare; and to conduct and analyse the research study. Necessary for scientific research purposes

Clinical Trial Data

We undertake clinical studies within the EEA and the UK and we will use information from subjects’ medical records and other health data in order to improve healthcare.  As a pharmaceutical 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 provision at Article 9(1) GDPR not to process special categories of data is that processing is necessary for scientific research purposes in accordance with Article 89(1) GDPR. This means that we will use your data when we act as the data controller for such studies, collected in the course of a research study, in the ways needed to conduct and analyse the research study. The Informed Consent Form will provide further detail of the processing of your personal data should you be a subject of a 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 personally-identifiable information possible.

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 legal basis which allows us to do so.

International Transfers of Personal Data

Our primary location is based outside the European Economic Area, so the processing of your personal data may involve a transfer of data outside the EEA or UK.  Information on how to contact the DPO can be found above in this Notice (“How to Contact Us”).

Whenever we transfer your personal data out 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 or UK Government or where we have an appropriate lawful basis.
  • Regarding transfers to the US, we incorporate Standard Contractual Clauses in agreements for transfer from the EEA provided by the European Commission or from the UK by the International Data Transfer Agreement provided by the Information Commissioner’s Office in the UK in order to provide similar protection to personal data shared within Europe or the UK.
  • We may have previously relied on the EU-US or the Swiss-US Privacy Shield to transfer your data from the EEA, UK, or Switzerland to the US. Please note that as of July 16, 2020, we no longer rely on Privacy Shield as a valid data transfer mechanism.
  • We are committed to compliance with the EU-U.S. Data Privacy Framework (“EU-U.S. DPF”), for which the European Commission issued an Adequacy Decision on July 10, 2023.

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.

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

Under certain circumstances, if you are a person located within the EEA or UK you have the following data protection rights:

  • access to your personal data.
  • correction of your personal data.
  • erasure of your personal data.
  • object to processing of your personal data.
  • restrict of processing your personal data.
  • transfer of your personal data.
  • withdraw consent to any consent that you have previously given.

If you wish to exercise any of the rights set out above, please contact our Data Protection Officer at sar@thedpo.co.uk.  You can also contact the Supervisory Authority in the country of your residence within the EU or UK for advice or to make a complaint.  Please be aware that your rights in relation to clinical research data may be limited.

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.

EU-U.S. DATA PRIVACY FRAMEWORK

Effective Date: August 1, 2023

Karyopharm Therapeutics complies with the EU-U.S. Data Privacy Framework (EU-U.S. DPF) as set forth by the U.S. Department of Commerce.  Karyopharm Therapeutics has certified to the U.S. Department of Commerce that it adheres to the EU-U.S. Data Privacy Framework Principles (EU-U.S. DPF Principles) with regard to the processing of personal data received from the European Union in reliance on the EU-U.S. DPF. Karyopharm Therapeutics has certified to the U.S. Department of Commerce that it adheres to the EU-U.S. Data Privacy Framework Principles (EU-U.S. DPF Principles) with regard to the processing of personal data received from the European Union in reliance on the EU-U.S. DPF.  If there is any conflict between the terms in this privacy policy and the EU-U.S. DPF Principles, the Principles shall govern.  To learn more about the Data Privacy Framework (DPF) program, and to view our certification, please visit https://www.dataprivacyframework.gov/.

Advisory: Please note that from May 18, 2018 through the August 1, 2023, Karyopharm complied with the Privacy Shield as set forth by the US Department of Commerce regarding the processing of Personal Data transferred from the EU to the US (for these purposes, reference to the EU also includes the European Economic Area countries of Iceland, Liechtenstein, and Norway). As of July 16, 2020, Karyopharm no longer relied on Privacy Shield as a valid data transfer mechanism, and instead relied on alternative data transfer mechanisms deemed appropriate by the relevant authorities to transfer data collected from the European Economic Area (EEA), Switzerland, and the UK to the U.S., such as standard contractual clauses.

Scope: This Policy applies to Personal Data other than human resources (“HR”) personal data, that is received by Karyopharm in the US from the EU (For further information about Personal Data covered by this Policy, please see section “Types of Personal Data Collected” below.). Karyopharm commits to comply with the EU-U.S. DPF Principles in respect of such Personal Data.

Processing of HR personal data transferred from our subsidiary located in the EU (Karyopharm Europe GmbH) to Karyopharm under the EU-U.S. DPF is subject to an HR privacy policy that is available for viewing by all employees.  

Types of Personal Data Collected: “Personal Data” is any information that can be used to identify an individual that is received from the EU and is recorded in any form. Personal Data includes Sensitive Data. “Sensitive Data” is Personal Data that specifies medical or health conditions, racial or ethnic origin, political opinions, religious or philosophical beliefs, trade union membership, or information specifying the sex life of the individual.

We may collect the following types of Personal Data: Personal Data pertaining to our vendors, contractors, and consultants, as well as clinical research participants, study investigators and their staff, medical and healthcare professionals, and pharmaceutical industry experts and opinion leaders. Personal Data may include full name, address, telephone or mobile number, business and home contact details including e-mail addresses, health information and demographic information, as well as other Personal Data that you voluntarily provide to us, such as when you contact us with inquiries. Personal Data may further include any information that identifies an individual but does not include information that has been anonymized.

Purposes of Data Processing: Personal Data that may be collected will be used for the purpose of supporting Karyopharm’s business activities related to the development of drug candidates for the treatment of diseases, including performing clinical research or programs and for maintaining and improving company internal systems.

EU-U.S. DATA PRIVACY FRAMEWORK PRINCIPLES

Notice: This Policy provides notice of the Personal Data collected and transferred under the EU-U.S. DPF, including its use and handling, and how you may exercise your rights. This Policy also provides information about other EU-U.S. DPF Principles that are set forth below. Karyopharm adopted the Privacy Shield principles effective May 18, 2018, and the EU-U.S. DPF Principles effective August 1, 2023.

Choice: You may tell us not to disclose (“opt out”) your Personal Data. You may contact us to exercise your opt out preferences (see above section “How to Contact Us”). We will not collect or use your Sensitive Data unless you provide your affirmative express consent (“opt in”).

Accountability for Onward Transfers: Karyopharm may occasionally transfer Personal Data to a limited number of third-party contractors, service providers, and other businesses involved in the normal operations of our business to assist us in meeting business operation needs and to perform certain services and functions on our behalf and under our instructions. These parties may access, process, or store Personal Data in the course of performing their duties to Karyopharm. We maintain contracts with these providers that restrict their access, use, and disclosure of Personal Data, solely to that necessary to meet their contractual obligations in performing the specific functions described above.

Karyopharm may be required to disclose Personal Data to the extent required to meet a legal obligation, including national security or law enforcement obligations and applicable law, rule, order, or regulation.

We may also disclose Personal Data to other corporate entities in case of corporate sale, merger, reorganization, financing due diligence, dissolution, or similar event.

Security: Karyopharm maintains reasonable and appropriate security measures to protect Personal Data from loss, misuse, unauthorized access, disclosure, alteration, or destruction in light of the risks inherent in processing this information.

Data Integrity and Purpose Limitation: We will take reasonable steps to ensure that Personal Data is reliable for its intended use, accurate, complete, and current. We will adhere to the EU-U.S. DPF Principles for as long as we retain Personal Data about you.

Access: You have certain rights with respect to your Personal Data, including those described in our Privacy Policy under the title “Your Rights in Connection with Your Personally Identifiable Information.” Please address any requests you may have with respect such rights to the following email address: privacy@karyopharm.com. We will make good faith efforts to accommodate these requests within a reasonable time frame.

Recourse, Enforcement, Liability: In compliance with the EU-U.S. DPF Principles, Karyopharm commits to resolve complaints about our processing of your Personal Data. Individuals in the EU with inquiries or complaints regarding this Policy should first contact Karyopharm at privacy@karyopharm.com or by regular mail addressed to:

Any inquiries or complaints can also be addressed to our subsidiary located in Germany, by regular mail sent to:

Karyopharm Europe GmbH
Attn: Managing Director
Franziska-Bilek-Weg 9
80339 München
Germany

Karyopharm has further committed to refer unresolved privacy complaints under the EU-U.S. DPF Principles to the International Centre for Dispute Resolution®, the international division of the American Arbitration Association, a not-for-profit alternative dispute resolution organization located in the United States. If you do not receive timely acknowledgment of your complaint, or if your complaint is not satisfactorily addressed, please visit https://www.icdr.org/dpf for more information and to file a complaint. The services of the International Centre for Dispute Resolution are provided at no cost to you.

Please note that if your complaint is not resolved through these channels, under limited circumstances, a binding arbitration option may be available. For additional information, please visit: http://go.adr.org/dpf_irm.html.

With respect to Personal Data received or transferred pursuant to the Privacy Shield, Karyopharm is subject to the investigatory and enforcement powers of the Federal Trade Commission. The Federal Trade Commission also has jurisdiction over Karyopharm’s compliance with the EU-U.S. Data Privacy Framework (EU-U.S. DPF).

To the extent that Karyopharm receives or processes HR personal data from the EU for use in the context of an employment relationship under the EU-U.S. DPF, Karyopharm agrees to cooperate with the EU data protection authorities and comply with the advice given by such authorities with respect to this data, as further described in our HR privacy policy.

Karyopharm remains responsible and liable under the EU-U.S. DPF Principles if third-party agents that it may engage to process Personal Data on its behalf do so in a manner inconsistent with the EU-U.S. DPF Principles, unless Karyopharm proves that it is not responsible for the event giving rise to the damage.

Changes to the Policy: We reserve the right to amend this Policy from time to time consistent with the EU-U.S. DPF’s requirements.

California Privacy Notice

Date Last Updated: January 1, 2023

If you are a California resident, the California Consumer Privacy Act and the California Privacy Rights Act (collectively, the “CCPA”) provide you with certain rights regarding your personal information, including the right to know about personal information collected, disclosed, or sold; the right to request that we delete personal information that we have collected from you; the right to update or correct your information; the right to opt-out of the sale or sharing of your personal information; the right to limit our use of your sensitive personal information; and the right not to be discriminated against for exercising your rights. These rights are subject to certain exceptions. For example, information that we process about you in a clinical trial setting may be exempt from the scope of the CCPA. You may also visit our Privacy Policy to learn more about how we protect your information.  

Any capitalized terms in this California Privacy Notice that are not otherwise defined have the same meaning as they do in the CCPA or in our Privacy Policy.  

Collection of Personal Information 

If you visit our website (located at https://www.karyopharm.com), interact with our mobile device software applications (including KaryoMPN), or use the features made available on the website or apps (collectively, the “Services”), we may collect information that identifies, relates to, describes, is reasonably capable of being associated with, or could reasonably be linked, directly or indirectly, with a particular consumer or household (“personal information”). We may have collected the following categories of personal information about you over the past 12 months:

  • Identifiers, such as your name, email address, and physical address.
  • Categories of personal information described in subdivision (e) of California Civil Code Section 1798.80, such as your name, physical characteristics or description, address, telephone number, or medical information.
  • Characteristics of protected classifications under California or federal law, such as your age, race, and gender.
  • Biometric information, such as weight and muscle mass, as well as sleep, activity, heart rate, respiration rate, and gait data.
  • Audio, electronic, visual, thermal, olfactory, or similar information.
  • Internet or other electronic network activity information, such as your cookies.
  • Geolocation data, in order to enable synchronization of data between our Services
  • Sensitive personal information (in relation to a clinical trial), such as information about your race or ethnic origin, genetic data, and information about your health.
  • Inferences drawn from any of the information identified above.

We collect the personal information listed above from the following sources:

  • From you directly, when you provide it to us. 
  • From clinical trial sites.
  • Automatically from your browser or from our Services.
  • Other apps, such as the Apple Health Application.

We collect the personal information listed above for the following business purposes:

  • To maintain the safety and security of our Services.
  • As we believe to be required or appropriate under applicable law, to respond to requests from government authorities and comply with legal obligations.
  • To conduct research studies.
  • To compose and convey documents to government agencies throughout the world, including the FDA. 
  • To report undesirable events to the FDA and other government health agencies. 
  • To provide overall study results to other study doctors, including in publications.
  • To conduct new medical research.
  • To develop new medical products.
  • To request approval to market our products.
  • To manage our business.
  • To assist you with supportive care, as needed.

Disclosure of Personal Information 

In the last 12 months, we may have disclosed for our business purposes the following categories of personal information subject to the CCPA:  

  • Identifiers, such as your name, email address, and physical address.
  • Categories of personal information described in subdivision (e) of California Civil Code Section 1798.80, such as your name, physical characteristics or description, address, telephone number, or medical information.
  • Characteristics of protected classifications under California or federal law, such as your age, race, and gender.
  • Audio, electronic, visual, thermal, olfactory, or similar information.
  • Biometric information, such as weight and muscle mass, as well as sleep, activity, heart rate, respiration rate, and gait data.
  • Internet or other electronic network activity information, such as your cookies.
  • Geolocation data, in order to enable synchronization of data between our Apps and Devices.
  • Sensitive personal information (in relation to a clinical trial), such as information about your race or ethnic origin, genetic data, and information about your health.
  • Inferences drawn from any of the information identified above.

We may have disclosed or shared any of the information listed above with: 

  • Our service providers and contractors, including app developers and data hosting providers.
  • Study doctors and study staff.
  • Other health care providers at the study site institution.
  • Your physician and his/her staff.
  • Our representatives and third parties working for or providing services for a study sponsor.
  • FDA or other competent and governmental authorities.
  • Other countries’ state or federal regulatory agencies.
  • An Institutional Review Board or Ethics Review Committee (i.e., a committee that oversees medical research to ensure that the rights and welfare of human research subjects are protected).
  • Other third parties when necessary to fulfill your requests for services; to complete a transaction that you initiate; to meet the terms of any agreement that you have with us or our partners; or to manage our business (e.g., contract research organizations and other businesses involved in clinical study management and drug development). 
  • Other third parties for a legal purpose (such as in response to a court order or to defend against a legal claim).
  • Other third parties when necessary to investigate, prevent, or take action regarding illegal activities, suspected fraud, violations of our terms and conditions, or situations involving threats to our property or the property or physical safety of any person or third party.
  • Other third parties in the event of corporate sale, merger, reorganization, financing due diligence, dissolution, or similar event.

We disclose or share your personal information to the entities listed above for the following purposes: 

  • To maintain the safety and security of our Services.
  • As we believe to be required or appropriate under applicable law, to respond to requests from government authorities and comply with legal obligations.
  • To conduct research studies.
  • To compose and convey documents to government agencies throughout the world, including the FDA.
  • To report undesirable events to the FDA and other government health agencies. 
  • To provide overall study results to other study doctors, including in publications.
  • To conduct new medical research.
  • To develop new medical products.
  • To request approval to market our products.
  • To manage our business.
  • To assist you with supportive care, as needed.

Your Rights

If we maintain personal information about you that is subject to CCPA, you may exercise certain rights in connection with this data if you are a California resident. 

Right to Know

California residents have the right to request that we disclose certain information about our collection and use of your personal information over the past twelve months (“Right to Know”).  Once we receive and confirm your verifiable consumer request, we will disclose to you: 

  • The categories of personal information we collected about you. 
  • The categories of sources for the personal information we collected about you.
  • The categories of personal information that we have disclosed for a business or commercial purpose.
  • Our business or commercial purposes for collecting, selling, or sharing personal information.
  • The categories of third parties with whom we share or disclose that personal information.
  • The specific pieces of personal information we collected about you (i.e., a data portability request).

Right to Delete

California residents have the right to request that we delete the personal information that we collected from you and retain, subject to certain exceptions (“Right to Delete”). Once we receive and verify your request, we will delete (and direct our service providers/contractors to delete) your personal information from our records, unless an exception applies. 

Right to Correct

California residents have the right to correct or amend the personal information we have on file (“Right to Correct”). You may correct or amend by logging into your account or by contacting us using the information below. Information on how to contact the DPO can be found above in this Notice (“How to Contact Us”).

Right to Opt-Out of Sale or Sharing

The CCPA provides California residents with the right to opt-out of the “sale” or “sharing” of their personal information (“Right to Opt Out”). In the last 12 months, we have not sold or shared any categories of personal information subject to the CCPA. We also do not have actual knowledge that we sell or share the personal information of California residents under the age of 16.  

Right to Limit the Use of Your Sensitive Personal Information

The CCPA provides California residents with the right to limit the use of their “sensitive personal information” for the purposes outlined in 11 CCR § 7027(m) of the CCPA. 

We do not use your sensitive personal information for any purposes outside of those permitted in 11 CCR § 7027(m).

Right to Nondiscrimination

The CCPA provides California residents with the right not to receive discriminatory treatment for the exercise of their privacy rights conferred by the CCPA. We will not discriminate against you for exercising any of your CCPA rights. 

Exercising Your Rights

If you are a California resident and wish to exercise your Right to Know, Right to Delete, or Right to Correct, you may submit a request to us by email at privacy@karyopharm.com or by regular mail addressed to: 

Karyopharm Therapeutics Inc.

Attn: General Counsel

85 Wells Ave., 2nd floor

Newton, MA 02459 USA

When you submit a request, we will confirm your identity by asking you to provide information associated with what we have on file for you, including your name, email address, and other identifying information. We may ask you for additional information to verify your identity or to comply with your request.

Authorized Agent

You may authorize an agent to make a request on your behalf. To designate an agent, please provide a written and signed document by both you and the agent that authorizes the agent to act on your behalf. You may also use a power of attorney. We will still require you to provide information to allow us to reasonably verify that you are the person about whom we collected personal information.

Data Retention

We retain personal information about you necessary to fulfill the purpose for which that information was collected or as required or permitted by law. We do not retain personal information longer than is necessary for us to achieve the purposes for which we collected it.  When we destroy your personal information, we do so in a way that prevents that information from being restored or reconstructed.

Shine the Light Law

In addition to the CCPA, California’s “Shine the Light” law, Civil Code section 1798.83, requires certain businesses to respond to requests from California customers asking about the businesses’ practices related to disclosing personal information to third parties for the third parties’ direct marketing purposes. We do not disclose your personal information for these purposes.

Contact for More Information

If you wish to contact us regarding this California Privacy Notice, our contact information can be found above in this Notice (“How to Contact Us”).

Medidata Patient Cloud Mobile Application Privacy Policy

Effective: January 1, 2024

This Privacy Policy (“Policy”) describes how Karyopharm Therapeutics Inc. (“Company,” “we,” “our,” “us”) collects, uses, and discloses certain personal information obtained through the Medidata Patient Cloud (“Patient Cloud”) mobile device software application (the “App” or the “Study App”). By using the App and the Devices, you are agreeing to the terms of this Policy.

You have been asked to install the companion study application on your personal mobile device or have been provided with a device to complete a daily dosing diary, Myelofibrosis Symptom Assessment Forms (MFSAF) for evaluating symptom response (i.e., TSS50), Patient Global Impression of Change (PGIC) questionnaire, Patient Global Impression of Severity (PGIS), and/or EuroQol5 dimensions 5 levels (EQ-5D-5L) questionnaire via ePRO administration.  This is a voluntary part of the study. In case you choose not to participate in digital ePRO administration, you should complete the daily assessment using the paper form (and bring completed forms to the next visit). If you don’t own a compatible device, one may be loaned to you by the Sponsor, at no cost to you, solely for your use during your participation in the study. At the end of the study, you will be responsible to return to the site the device that has been loaned to you. Patient Cloud was developed by Medidata, and it is compliant with all applicable laws, including all privacy laws like the General Data Protection Regulation (GDPR) and the California Privacy Rights Act (CPRA). The study application will be set up at the site using the special code that identifies you.  The Sponsor will use the study application to collect the information listed above, directly from the device and transmit the information to the Sponsor’s research data collection system.  The transfer of this information from the device to the study app, and then from the study app to the research data collection system, will be completed using secure and encrypted communication.  The data transmitted will not include any identifying details about you – it will be linked only to your special study code. The study application will send you notifications and reminders if no new data has been collected from the device in the last 48 hours.

Additional information has been provided to you in the XPORT-MF-034 informed consent form (the “Consent Form”). Please refer to the Consent Form for more detailed information on the clinical study of which the Study App and the Device are components. If you have not received the Consent Form, or if you have declined to provide consent for the processing of your personal identifying information or personal data, please do not download this App.

This Policy applies only to information collected through the App and the Device and therefore does not apply to data we collect in other contexts, such as our corporate website located at https://www.karyopharm.com/. Please review the privacy policies applicable to any other online services we may operate for information about applicable data practices. 

What information we collect and maintain about you

We collect personal and other information from you directly when you provide it to us through the App and the Device.  

Personal Information you provide.  If you download and use the App or use the Device, you will be required to provide personal information, including information pertaining to physical activity, sleep patterns, and body composition. When you first download the Study App you will be asked for certain personal information, such as name, email address, and date of birth. You will also have to enable background location permission to synchronize the data between the App and the Device. The App collects location data only to enable searching and connecting to the Device over Bluetooth even when the App is not in use.

Usage Information.  We collect information about the frequency and nature of your interactions with the Study App and the Device.

Note that, if you choose to be in this study, you will receive a unique 10-digit number to be used in place of your personal identifying information on all study-related samples and data. All final data sets will only contain your 10-digit number. Your name will never appear on any records, only this 10-digit code number.

How we use your information

Company uses the information that we collect for a variety of purposes.  These purposes include, for example:

  • To analyze and make conclusions about the results of the study;
  • Composing and conveying documents to government agencies throughout the world including the FDA and to request approval to market this product;
  • For reporting undesirable events to the FDA and other government health agencies;
  • To provide overall study results to other study doctors, including in publications;
  • To conduct new medical research, to reanalyze the study results in the future, or to combine your information with information from other studies;
  • To develop new medical products; 
  • To manage our business; and
  • To provide to your physician so they can assist you with supportive care, as needed.

When possible and consistent with the uses and disclosures of personal information or personal data discussed here, the Company will attempt to make sure information cannot be linked to you (de-identified).

Company may link information gathered through the Study App and the Device with information that we collect in other contexts. But in that event, we will handle the combined information in a manner consistent with this Policy.

With Whom and Why We Share Your Information

We will take steps to ensure that information obtained about you for this study will be kept confidential to the extent required by US or applicable law.  Records identifying you as a patient will be kept confidential and any published results will not reveal your identity. Your study results will be provided to Karyopharm for its use and the company may continue to use your health information that is collected as part of this study in the future.

We share your information with other parties for a variety of purposes, as described below.

  • To conduct the study;
  • To compose and convey documents to government agencies throughout the world including the FDA and to request approval to market this product;
  • To report undesirable events to the FDA and other government health agencies; and
  • To provide overall study results to other study doctors, including for use in publications.

It is possible that other people such as those indicated below, may become aware of your participation in the study and may inspect and copy records pertaining to this research. Accordingly, research information that identifies you may be shared with the following: 

  • Study doctor and study staff
  • Other health care providers at the study site institution
  • Your family doctor and his/her staff
  • Karyopharm and/or its representatives and third parties working for or providing services for the Sponsor
  • The United States Food and Drug Administration(FDA), Health Canada, the European Medicines Agency (EMA) or other competent and governmental authorities
  • Other countries’ state or federal regulatory agencies
  • Your legal representative you have authorized to access your medical records
  • Institutional Review Board or Ethics Review Committee – A committee that oversees medical research to ensure that the rights and welfare of human research subjects are protected

Company makes best efforts to ensure that any third party with whom we share personal data will provide the same or equal protection of such data as stated in this Policy.

With third-party service providers.

To provide the best experience to you and to conduct the study, Company uses third-party service providers that perform services on our behalf, including app developers and data hosting providers. These service providers may collect and/or use your information to assist us in achieving the purposes discussed above.

We may share your information with other third parties when necessary to fulfill your requests for Services; to complete a transaction that you initiate; to meet the terms of any agreement that you have with us or our partners; or to manage our business.

Legal purposes.  We also may use or share your information with third parties when we believe, in our sole discretion, that doing so is necessary:

  • To comply with applicable law or a court order, subpoena, or other legal process;
  • To investigate, prevent, or take action regarding illegal activities, suspected fraud, violations of our terms and conditions, or situations involving threats to our property or the property or physical safety of any person or third party; or
  • To establish, protect, or exercise our legal rights or defend against legal claims. 

Aggregated information.  Company may also share aggregated information about Study App and Device users. Such aggregated information will not identify you personally.

How you can access, delete, or correct your information

If you want to learn more about the personal information that Company has about you, or you would like to update, change, or delete that information, please contact us (see above section “How to Contact Us”).

At any point, you may withdraw your consent by telling your study doctor that you no longer want to be in this study. You do not need to give a reason for your withdrawal and will be able to withdraw without any penalties. If you decide to stop participation in the additional research, you may still take part in the main study. 

Data Security

We employ physical, technical, and administrative procedures to safeguard the personal information we collect online. However, no software is 100% secure, and we cannot ensure or warrant the security of any information you transmit to the App or to us, and you transmit such information at your own risk.

Data Retention

We retain personal information about you necessary to fulfill the purpose for which that information was collected or as required or permitted by law. We do not retain personal information longer than is necessary for us to achieve the purposes for which we collected it. When we destroy your personal information, we do so in a way that prevents that information from being restored or reconstructed.

International Users

The information that we collect through or in connection with the Study App and the Device is transferred to and processed in the United States for the purposes described above. Company may also subcontract the processing of your data to, or otherwise share your data with, affiliates or third parties in the United States or countries other than your country of residence. The data-protection laws in these countries may be different from, and less stringent than, those in your country of residence. By using the Study App and the Device or by providing any personal or other information to us, you expressly consent to such transfer and processing.

Your Rights

Depending on your jurisdiction, you may have the right to:

  • Access or receive a copy of your personal information
  • Correct your personal information
  • Delete your personal information
  • Opt-out of the processing of your personal information (such as the sale or sharing of your information or the use of your personal information for targeted advertising purposes)
  • Object to the use of your personal information for certain purposes (such as direct marketing)
  • Restrict the use of your personal information for certain automated decision-making purposes
  • Revoke consent in relation to the processing of your personal information (to the extent that we rely on your consent)

If you want to exercise any of these rights, please email us at privacy@karyopharm.com. We may validate your identity prior to complying with your request by comparing the information you provide with what we have on file. We will comply with all valid requests in the time period required under applicable law.

Further Information for Users in California

If you are a California resident, the California Consumer Privacy Act and the California Privacy Rights Act (collectively, the “CCPA”) provide you with certain rights regarding your personal information. Visit the California Privacy Notice Section to learn more about those rights.

Further Information for Users in the European Economic Area and United Kingdom

If you are a resident of the EEA or the UK, please review the Supplemental European Privacy Notice Section for additional rights that may apply to you.

Children

Content on this App is directed at individuals over the age of 18 and is not directed at children under the age of 13. We do not knowingly collect personally identifiable information from children under the age of 13.

Changes to this Policy

Company may make changes to the App in the future and as a consequence will need to revise this Policy to reflect those changes. Company will post all such changes on the App, so you should review this page periodically.  If we make a material change to the Policy, you will be provided with appropriate notice.

How to Contact Us

Should you have any questions or concerns about this Policy, our contact information can be found above in this Notice (“How to Contact Us”)

KaryoMPN Mobile Application Privacy Policy

Effective: January 1, 2023 

This Privacy Policy (“Policy”) describes how Karyopharm Therapeutics Inc. (“Company,” “we,” “our,” “us”) collects, uses, and discloses certain personal information obtained through our KaryoMPN mobile device software application (the “App” or the “Study App”), smartwatch, and body composition scale (“Devices”). By using the App and the Devices, you are agreeing to the terms of this Policy.

Additional information has been provided to you in the “Patient Information and Informed Consent to Participate in Optional Additional Research Using Smartwatch and Body Composition Scale” document (the “Consent Form”). Please refer to the Consent Form for more detailed information on the clinical study of which the Study App and the Devices are components. If you have not received the Consent Form, or if you have declined to provide consent for the processing of your personal identifying information or personal data, please do not download this App.

This Policy applies only to information collected through the App and the Devices and therefore does not apply to data we collect in other contexts, such as our corporate website located at https://www.karyopharm.com. Please review the privacy policies applicable to any other online services we may operate for information about applicable data practices. 

What information we collect and maintain about you

We collect personal and other information from you directly when you provide it to us through the App and the Devices.  

Personal Information you provide.  If you download and use the App or use the Devices, you will be required to provide personal information, including information pertaining to physical activity, sleep patterns, and body composition. When you first download the Study App you will be asked for certain personal information, such as name, email address, and date of birth. You will also have to enable background location permission to synchronize the data between the App and the Devices. The App collects location data only to enable searching and connecting to the Devices over Bluetooth even when the App is not in use.

Usage Information.  We collect information about the frequency and nature of your interactions with the Study App and the Devices.

Note that, if you choose to be in this study, you will receive a unique 10-digit number to be used in place of your personal identifying information on all study-related samples and data. All final data sets will only contain your 10-digit number. Your name will never appear on any records, only this 10-digit code number.

How we use your information

Company uses the information that we collect for a variety of purposes.  These purposes include, for example:

  • To analyze and make conclusions about the results of the study;
  • Composing and conveying documents to government agencies throughout the world including the FDA and to request approval to market this product;
  • For reporting undesirable events to the FDA and other government health agencies;
  • To provide overall study results to other study doctors;
  • To conduct new medical research, to reanalyze the study results in the future, or to combine your information with information from other studies;
  • To develop new medical products; 
  • To manage our business; and
  • To provide to your physician so they can assist you with supportive care, as needed.

When possible and consistent with the uses and disclosures of personal information or personal data discussed here, the Company will attempt to make sure information cannot be linked to you (de-identified).

Company may link information gathered through the Study App and the Devices with information that we collect in other contexts. But in that event, we will handle the combined information in a manner consistent with this Policy.

With Whom and Why We Share Your Information

We will take steps to ensure that information obtained about you for this study will be kept confidential to the extent required by US or applicable law.  Records identifying you as a patient will be kept confidential and any published results will not reveal your identity. Your study results will be provided to Karyopharm for its use and the company may continue to use your health information that is collected as part of this study in the future.

We share your information with other parties for a variety of purposes, as described below.

  • To conduct the study;
  • To compose and convey documents to government agencies throughout the world including the FDA and to request approval to market this product;
  • To report undesirable events to the FDA and other government health agencies; and
  • To provide overall study results to other study doctors, including for use in publications.

It is possible that other people such as those indicated below, may become aware of your participation in the study and may inspect and copy records pertaining to this research. Accordingly, research information that identifies you may be shared with the following: 

  • Study doctor and study staff
  • Other health care providers at the study site institution
  • Your family doctor and his/her staff
  • Karyopharm and/or its representatives and third parties working for or providing services for the Sponsor
  • FDA or other competent and governmental authorities
  • Other countries’ state or federal regulatory agencies
  • Your legal representative you have authorized to access your medical records
  • Institutional Review Board or Ethics Review Committee – A committee that oversees medical research to ensure that the rights and welfare of human research subjects are protected

Company makes best efforts to ensure that any third party with whom we share personal data will provide the same or equal protection of such data as stated in this Policy.

With third-party service providers.

To provide the best experience to you and to conduct the study, Company uses third-party service providers that perform services on our behalf, including app developers and data hosting providers. These service providers may collect and/or use your information to assist us in achieving the purposes discussed above.

We may share your information with other third parties when necessary to fulfill your requests for Services; to complete a transaction that you initiate; to meet the terms of any agreement that you have with us or our partners; or to manage our business.

Legal purposes.  We also may use or share your information with third parties when we believe, in our sole discretion, that doing so is necessary:

  • To comply with applicable law or a court order, subpoena, or other legal process;
  • To investigate, prevent, or take action regarding illegal activities, suspected fraud, violations of our terms and conditions, or situations involving threats to our property or the property or physical safety of any person or third party; or
  • To establish, protect, or exercise our legal rights or defend against legal claims. 

Aggregated information.  Company may also share aggregated information about Study App and Device users. Such aggregated information will not identify you personally.

How you can access, delete, or correct your information

If you want to learn more about the personal information that Company has about you, or you would like to update, change, or delete that information, please contact us (see above section “How to Contact Us”).

At any point, you may withdraw your consent by telling your study doctor that you no longer want to be in this study. You do not need to give a reason for your withdrawal and will be able to withdraw without any penalties. If you decide to stop participation in the additional research, you may still take part in the main study. 

Data Security

We employ physical, technical, and administrative procedures to safeguard the personal information we collect online. However, no software is 100% secure, and we cannot ensure or warrant the security of any information you transmit to the App or to us, and you transmit such information at your own risk.

Data Retention

We retain personal information about you necessary to fulfill the purpose for which that information was collected or as required or permitted by law. We do not retain personal information longer than is necessary for us to achieve the purposes for which we collected it. When we destroy your personal information, we do so in a way that prevents that information from being restored or reconstructed.

International Users

The information that we collect through or in connection with the Study App and the Devices is transferred to and processed in the United States for the purposes described above. Company may also subcontract the processing of your data to, or otherwise share your data with, affiliates or third parties in the United States or countries other than your country of residence. The data-protection laws in these countries may be different from, and less stringent than, those in your country of residence. By using the Study App and the Devices or by providing any personal or other information to us, you expressly consent to such transfer and processing.

Your Rights

Depending on your jurisdiction, you may have the right to:

  • Access or receive a copy of your personal information
  • Correct your personal information
  • Delete your personal information
  • Opt-out of the processing of your personal information (such as the sale or sharing of your information or the use of your personal information for targeted advertising purposes)
  • Object to the use of your personal information for certain purposes (such as direct marketing)
  • Restrict the use of your personal information for certain automated decision-making purposes
  • Revoke consent in relation to the processing of your personal information (to the extent that we rely on your consent)

If you want to exercise any of these rights, please email us at privacy@karyopharm.com. We may validate your identity prior to complying with your request by comparing the information you provide with what we have on file. We will comply with all valid requests in the time period required under applicable law.

Further Information for Users in California

If you are a California resident, the California Consumer Privacy Act and the California Privacy Rights Act (collectively, the “CCPA”) provide you with certain rights regarding your personal information. Visit the California Privacy Notice Section to learn more about those rights.

Further Information for Users in the European Economic Area and United Kingdom

If you are a resident of the EEA or the UK, please review the Supplemental European Privacy Notice Section for additional rights that may apply to you.

Children

Content on this App is directed at individuals over the age of 18 and is not directed at children under the age of 13. We do not knowingly collect personally identifiable information from children under the age of 13.

Changes to this Policy

Company may make changes to the App in the future and as a consequence will need to revise this Policy to reflect those changes. Company will post all such changes on the App, so you should review this page periodically.  If we make a material change to the Policy, you will be provided with appropriate notice.

How to Contact Us

Should you have any questions or concerns about this Policy, our contact information can be found above in this Notice (“How to Contact Us”)

KaryoMeter Mobile Application Privacy Policy

Advisory: Please note that as of December 5, 2023, we are no longer collecting data under this program.

Effective: August 5, 2021

This Privacy Policy (“Policy”) describes how Karyopharm Therapeutics Inc. (“Company,” “we,” “our,” “us”) collects, uses, and discloses certain personal information obtained through our KaryoMeter mobile device software application (the “App”). By using the App, you are agreeing to the terms of this Policy.

Additional information has been provided to you in the “Informed Consent to Participate in a Research Study” document (the “Consent Form”). Please refer to the Consent Form for more detailed information on the clinical study of which the App is a component. If you have not received the Consent Form, or if you have declined to provide consent for the processing of your personal identifying information or personal data, please do not download this App.

This Policy applies only to information collected through the App and therefore does not apply to data we collect in other contexts, such as our corporate website located at https://www.karyopharm.com/. Please review the privacy policies applicable to any other online services we may operate for information about applicable data practices. 

What information we collect and maintain about you: We collect personal and other information from you directly when you provide it to us through the App.

Personal Information you provide. If you download and use the App you will be required to provide personal information. The sleep, activity, and gait data (i.e., sleep duration, steps covered, energy burned, and walking speed) you provide to your Apple Health Application will also be shared with our App.  

Usage Information.  We collect information about the frequency and nature of your interactions with the App.

Note that, if you choose to be in this study, you will receive a unique 10-digit number to be used in place of your personal identifying information on all study-related samples and data. All final data sets will only contain your 10-digit number. Your name will never appear on any records, only this 10-digit code number.

How we use your information

Company uses the information that we collect for a variety of purposes. These purposes include, for example: 

  • To analyze and make conclusions about the results of the study,
  • Composing and conveying documents to government agencies throughout the world including the FDA and to request approval to market this product,
  • For reporting undesirable events to the FDA and other government health agencies,
  • To provide overall study results to other study doctors, including for use in publications,
  • To conduct new medical research, to reanalyze the study results in the future, or to combine your information with information from other studies,
  • To develop new medical products, and
  • To manage our business.

When possible and consistent with the uses and disclosures of personal information or personal data discussed here, the Company will attempt to make sure information cannot be linked to you (de-identified).

Company may link information gathered through the App with information that we collect in other contexts. But in that event, we will handle the combined information in a manner consistent with this Policy.

With Whom and Why We Share Your Information

We will take steps to ensure that information obtained about you for this study will be kept confidential to the extent required by US or applicable law. Records identifying you as a patient will be kept confidential and any published results will not reveal your identity. Your study results will be provided to Karyopharm for its use and the company may continue to use your health information that is collected as part of this study in the future.

We share your information with other parties for a variety of purposes, as described below.

  • To conduct the study;
  • To compose and convey documents to government agencies throughout the world including the FDA and to request approval to market this product;
  • To report undesirable events to the FDA and other government health agencies; and
  • To provide overall study results to other study doctors, including for use in publications.

It is possible that other people, such as those indicated below, may become aware of your participation in the study and may inspect and copy records pertaining to this research. Accordingly, research information that identifies you may be shared with the following: 

  • Study doctor and study staff
  • Other health care providers at the study site institution
  • Your family doctor and his/her staff
  • Karyopharm and/or its representatives and third parties working for or providing services for the Sponsor
  • FDA or other competent and governmental authorities
  • Other countries’ state or federal regulatory agencies
  • Your legal representative you have authorized to access your medical records
  • Institutional Review Board or Ethics Review Committee – A committee that oversees medical research to ensure that the rights and welfare of human research subjects are protected.

Company makes best efforts to ensure that any third party with whom we share personal data will provide the same or equal protection of such data as stated in this Policy.

With third-party service providers.

To provide the best experience to you and to conduct the study, Company uses third-party service providers that perform services on our behalf, including app developers and data hosting providers. These service providers may collect and/or use your information to assist us in achieving the purposes discussed above.

We may share your information with other third parties when necessary to fulfill your requests for Services; to complete a transaction that you initiate; to meet the terms of any agreement that you have with us or our partners; or to manage our business.

Legal purposes.  We also may use or share your information with third parties when we believe, in our sole discretion, that doing so is necessary:

  • To comply with applicable law or a court order, subpoena, or other legal process;
  • To investigate, prevent, or take action regarding illegal activities, suspected fraud, violations of our terms and conditions, or situations involving threats to our property or the property or physical safety of any person or third party; or
  • To establish, protect, or exercise our legal rights or defend against legal claims. 

Aggregated information.  Company may also share aggregated information about App users. Such aggregated information will not identify you personally.

How you can access, delete, or correct your information

If you want to learn more about the personal information that Company has about you, or you would like to update, change, or delete that information, please contact us (see above section “How to Contact Us”). At any point, you may withdraw your consent by telling the study team you no longer want to be in this study or by giving the study team a letter that says you no longer want to be in this study. Be sure to include the reason why you are leaving the study and the date that you wish to discontinue. You should send this letter to the contact person identified in your signed Consent Form. 

Data Security

We employ physical, technical, and administrative procedures to safeguard the personal information we collect. However, no software is 100% secure, and we cannot ensure or warrant the security of any information you transmit to the App or to us, and you transmit such information at your own risk.

Data Retention

We retain personal information about you necessary to fulfill the purpose for which that information was collected or as required or permitted by law. We do not retain personal information longer than is necessary for us to achieve the purposes for which we collected it. When we destroy your personal information, we do so in a way that prevents that information from being restored or reconstructed.

International Users

The information that we collect through or in connection with the App is transferred to and processed in the United States for the purposes described above. Company may also subcontract the processing of your data to, or otherwise share your data with, affiliates or third parties in the United States or countries other than your country of residence. The data-protection laws in these countries may be different from, and less stringent than, those in your country of residence. By using the App or by providing any personal or other information to us, you expressly consent to such transfer and processing.

Your Rights

Depending on your jurisdiction, you may have the right to:

  • Access or receive a copy of your personal information
  • Correct your personal information
  • Delete your personal information
  • Opt-out of the processing of your personal information (such as the sale or sharing of your information or the use of your personal information for targeted advertising purposes)
  • Object to the use of your personal information for certain purposes (such as direct marketing)
  • Restrict the use of your personal information for certain automated decision-making purposes
  • Revoke consent in relation to the processing of your personal information (to the extent that we rely on your consent).

If you want to exercise any of these rights, please email us at privacy@karyopharm.com. We may validate your identity prior to complying with your request by comparing the information you provide with what we have on file. We will comply with all valid requests in the time period required under applicable law.

Further Information for Users in California

If you are a California resident, the California Consumer Privacy Act and the California Privacy Rights Act (collectively, the “CCPA”) provide you with certain rights regarding your personal information. Visit the California Privacy Notice Section to learn more about those rights.

Further Information for Users in the European Economic Area and United Kingdom

If you are a resident of the EEA or the UK, please review our Supplementary EU Privacy Notice Section for additional rights that may apply to you.

Children

Content on this App is directed at individuals over the age of 18 and is not directed at children under the age of 13. We do not knowingly collect personally identifiable information from children under the age of 13.

Changes to this Policy

Company may make changes to the App in the future and as a consequence will need to revise this Policy to reflect those changes. Company will post all such changes on the App, so you should review this page periodically. If we make a material change to the Policy, you will be provided with appropriate notice.

How to Contact Us 

Should you have any questions or concerns about this Policy, our contact information can be found above in this Notice (“How to Contact Us”).

KaryoThrive Privacy Policy

Advisory: Please note that as of December 5, 2023, we are no longer collecting data under this program.

Effective: June 2, 2022

This Privacy Policy (“Policy”) describes how Karyopharm Therapeutics Inc. (“Company,” “we,” “our,” “us”) collects, uses, and discloses certain personal information obtained through our KaryoThrive mobile device software application (the “App”). By using the App, you are agreeing to the terms of this Policy.

Additional information has been provided to you in the “Informed Consent to Participate in a Research Study” document (the “Consent Form”).  Please refer to the Consent Form for more detailed information on the clinical study of which the App is a component.  If you have not received the Consent Form, or if you have declined to provide consent for the processing of your personal identifying information or personal data, please do not download this App.

This Policy applies only to information collected through the App and therefore does not apply to data we collect in other contexts, such as our corporate website located at https://www.karyopharm.com. Please review the privacy policies applicable to any other online services we may operate for information about applicable data practices. 

What information we collect and maintain about you

We collect personal and other information from you directly when you provide it to us through the App.

Personal Information you provide. If you download and use the App you will be required to provide personal information.  The sleep, activity, heartrate, respiration rate, and gait data (i.e., sleep duration, steps covered, energy burned, and walking speed) you provide to your Apple Health Application will also be shared with our App. 

Usage Information.  We collect information about the frequency and nature of your interactions with the App.

Note that, if you choose to be in this study, you will receive a unique 10-digit number to be used in place of your personal identifying information on all study-related samples and data. All final data sets will only contain your 10-digit number. Your name will never appear on any records, only this 10-digit code number.

How we use your information

Company uses the information that we collect for a variety of purposes.  These purposes include, for example: 

  • To analyze and make conclusions about the results of the study,
  • Composing and conveying documents to government agencies throughout the world including the FDA and to request approval to market this product,
  • For reporting undesirable events to the FDA and other government health agencies,
  • To provide overall study results to other study doctors, including for use in publications,
  • To conduct new medical research, to reanalyze the study results in the future, or to combine your information with information from other studies,
  • To develop new medical products, and
  • To manage our business.

When possible and consistent with the uses and disclosures of personal information or personal data discussed here, the Company will attempt to make sure information cannot be linked to you (de-identified).

Company may link information gathered through the App with information that we collect in other contexts. But in that event, we will handle the combined information in a manner consistent with this Policy.

With Whom and Why We Share Your Information

We will take steps to ensure that information obtained about you for this study will be kept confidential to the extent required by US or applicable law.  Records identifying you as a patient will be kept confidential and any published results will not reveal your identity. Your study results will be provided to Karyopharm for its use and the company may continue to use your health information that is collected as part of this study in the future.

We share your information with other parties for a variety of purposes, as described below.

  • To conduct the study;
  • To compose and convey documents to government agencies throughout the world including the FDA and to request approval to market this product;
  • To report undesirable events to the FDA and other government health agencies; and
  • To provide overall study results to other study doctors, including for use in publications.

It is possible that other people, such as those indicated below, may become aware of your participation in the study and may inspect and copy records pertaining to this research. Accordingly, research information that identifies you may be shared with the following: 

  • Study doctor and study staff
  • Other health care providers at the study site institution
  • Your family doctor and his/her staff
  • Karyopharm and/or its representatives and third parties working for or providing services for the Sponsor
  • FDA or other competent and governmental authorities
  • Other countries’ state or federal regulatory agencies
  • Your legal representative you have authorized to access your medical records
  • Institutional Review Board or Ethics Review Committee – A committee that oversees medical research to ensure that the rights and welfare of human research subjects are protected

Company makes best efforts to ensure that any third party with whom we share personal data will provide the same or equal protection of such data as stated in this Policy.

With third-party service providers.

To provide the best experience to you and to conduct the study, Company uses third-party service providers that perform services on our behalf, including app developers and data hosting providers. These service providers may collect and/or use your information to assist us in achieving the purposes discussed above.

We may share your information with other third parties when necessary to fulfill your requests for Services; to complete a transaction that you initiate; to meet the terms of any agreement that you have with us or our partners; or to manage our business.

Legal purposes.  We also may use or share your information with third parties when we believe, in our sole discretion, that doing so is necessary:

  • to comply with applicable law or a court order, subpoena, or other legal process;
  • to investigate, prevent, or take action regarding illegal activities, suspected fraud, violations of our terms and conditions, or situations involving threats to our property or the property or physical safety of any person or third party; or
  • to establish, protect, or exercise our legal rights or defend against legal claims. 

Aggregated information.  Company may also share aggregated information about App users. Such aggregated information will not identify you personally.

How you can access, delete, or correct your information

If you want to learn more about the personal information that Company has about you, or you would like to update, change, or delete that information, please contact us (see above section “How to Contact Us”). 

At any point, you may withdraw your consent by telling the study team you no longer want to be in this study or by giving the study team a letter that says you no longer want to be in this study. Be sure to include the reason why you are leaving the study and the date that you wish to discontinue. You should send this letter to the contact person identified in your signed Consent Form. 

Data Security

We employ physical, technical, and administrative procedures to safeguard the personal information we collect online. However, no software is 100% secure, and we cannot ensure or warrant the security of any information you transmit to the App or to us, and you transmit such information at your own risk.

Data Retention

We retain personal information about you necessary to fulfill the purpose for which that information was collected or as required or permitted by law.  We do not retain personal information longer than is necessary for us to achieve the purposes for which we collected it. When we destroy your personal information, we do so in a way that prevents that information from being restored or reconstructed.

International Users

The information that we collect through or in connection with the App is transferred to and processed in the United States for the purposes described above. Company may also subcontract the processing of your data to, or otherwise share your data with, affiliates or third parties in the United States or countries other than your country of residence. The data-protection laws in these countries may be different from, and less stringent than, those in your country of residence. By using the App or by providing any personal or other information to us, you expressly consent to such transfer and processing.

Your Rights

Depending on your jurisdiction, you may have the right to:

  • Access or receive a copy of your personal information
  • Correct your personal information
  • Delete your personal information
  • Opt-out of the processing of your personal information (such as the sale or sharing of your information or the use of your personal information for targeted advertising purposes)
  • Object to the use of your personal information for certain purposes (such as direct marketing)
  • Restrict the use of your personal information for certain automated decision-making purposes
  • Revoke consent in relation to the processing of your personal information (to the extent that we rely on your consent)

If you want to exercise any of these rights, please email us at privacy@karyopharm.com. We may validate your identity prior to complying with your request by comparing the information you provide with what we have on file. We will comply with all valid requests in the time period required under applicable law.

Further Information for Users in California

If you are a California resident, the California Consumer Privacy Act and the California Privacy Rights Act (collectively, the “CCPA”) provide you with certain rights regarding your personal information. Visit the California Privacy Notice Section to learn more about those rights.

Further Information for Users in the European Economic Area and United Kingdom

If you are a resident of the EEA or the UK, please review the Supplemental European Privacy Notice Section for additional rights that may apply to you.

Children

Content on this App is directed at individuals over the age of 18 and is not directed at children under the age of 13. We do not knowingly collect personally identifiable information from children under the age of 13.

Changes to this Policy

Company may make changes to the App in the future and as a consequence will need to revise this Policy to reflect those changes. Company will post all such changes on the App, so you should review this page periodically.  If we make a material change to the Policy, you will be provided with appropriate notice.

How to Contact Us

Should you have any questions or concerns about this Policy, our contact information can be found above in this Notice (“How to Contact Us”).