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.

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 via cookies and related technologies, 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, will not be transferred outside Karyopharm without your prior consent, except where permitted by applicable law, but may be used within Karyopharm, or by a third-party acting as an agent of Karyopharm, for processing and mailing purposes.

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 maintains contracts with third-parties who process information on Karyopharm’s behalf, which are intended to provide adequate safeguards for your personally identifiable information (e.g., restriction of their access, use, retention and disclosure of personally identifiable information, solely to meet their contractual obligations in the performance of the specific functions described above). A copy of these safeguards may be made available by writing to us at the address provided in the Contact Us section below.

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

Retention: Karyopharm may maintain the data collected in an electronic database. 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, including in compliance with Karyopharm’s records retention policy, 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 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.” Any data transmitted over the Internet may be at risk; however, once it is received at Karyopharm and entered into its database, it has the same protection that Karyopharm extends to its own confidential information.

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 contents 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.

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: While Karyopharm does not provide your personally identifiable information to third parties for their use in marketing, under California law, California residents have the right to opt-out of such use of their personally identifiable information if it occurred.

Your Rights in Connection with Your Personally Identifiable Information: Under certain circumstances, and as required by law 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.
  • Request the restriction of processing of your personally identifiable information to suspend the processing, for example if you want us to verify its accuracy or the reason for processing it.
  • Request the transfer of your personally identifiable information to another party.

If you want to exercise any of these rights, please see the Contact Us section of this Privacy Policy. Valid requests will be honored within 30 calendar days of request. This 30-day period may be extended for another 2 months for complex requests, with notification of the reasons for the extension to you.

You will not have to pay a fee to access your personally identifiable information (or to exercise any of the other rights). However, we may charge a reasonable fee if your request for access is unfounded or excessive. Alternatively, we may refuse to comply with the request in such circumstances. In addition, there may be requests that we are unable to process because of other EU legal requirements. If a request is denied, we will notify you of the reason.

We may need to request specific information from you to help us confirm your identity and ensure your right to access the information (or to exercise any of your other rights). This is an appropriate security measure to ensure that personally identifiable information is not disclosed to a person who doesn’t have the right to receive it.

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.

Contacting 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: Associate 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 are located in the EU, you have the right to lodge a complaint with an EU Supervisory Authority. However, if you have a complaint regarding the processing of your personally identifiable information, we request that you first contact us, and we will reply on timely basis.

Data Controller: As it pertains to users of our website located in the EU, the controller of your personally identifiable information is Karyopharm Therapeutics Inc.

Legal Basis of Processing: Some jurisdictions require we explain the legal basis for the collection and processing of personally identifiable information. We have several different legal grounds on which we collect and process personally identifiable information, including: (i) as necessary to perform a transaction (such as to provide the services you requested)(ii) as necessary to comply with a legal obligation; (iii) consent (where you have provided consent as appropriate under applicable law, such as for marketing or certain cookies); and (iv) necessary for legitimate interests (such as when we act to maintain our business generally, including maintaining the safety and security of the website).

EU-US PRIVACY SHIELD POLICY

With respect to transfers from the European Union (“EU”), while the European Court of Justice has held that the EU-U.S. Privacy Shield Framework (the “Privacy Shield”) is no longer “adequate” for the transfer of personally identifiable information (“Personal Data”) from the EU to the U.S., Karyopharm Therapeutics Inc. (“Karyopharm” or “Company”) continues to abide by the privacy principles and other requirements of Privacy Shield with respect to personal data we collect in the U.S. from data subjects in the EU.  In addition, Karyopharm has implemented other appropriate cross-border transfer solutions, such as Standard Contractual Clauses, to provide adequate protection for transfers of certain Personal Data from the EU to the U.S.

Effective Date: May 18, 2018
Karyopharm complies 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). Karyopharm has certified that it adheres to the Privacy Shield Principles of Notice, Choice, Accountability for Onward Transfer, Security, Data Integrity and Purpose Limitation, Access, and Recourse, Enforcement and Liability (“Privacy Shield Principles”). If there is any conflict between the policies in this EU-US Privacy Shield policy (“Policy”) and the Privacy Shield Principles, the Privacy Shield Principles shall govern. To learn more about the Privacy Shield program, and to view our certification page and a full list of self-certified companies, please visit https://www.privacyshield.gov.

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 Privacy Shield 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 Privacy Shield is subject to an HR privacy policy which is available for viewing by all employees in a folder entitled “HR Privacy” located on Karyopharm’s internal server and in the Company’s Employee Handbook.

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.

PRIVACY SHIELD PRINCIPLES

Notice: This Policy provides notice of the Personal Data collected and transferred under the Privacy Shield, including its use, and handling, and how you may exercise your Privacy Shield rights. This Policy also provides information about other Privacy Shield principles that are set forth below.

Choice: You may tell us not to disclose (“opt out”) your Personal Data: You may contact Karyopharm’s Associate General Counsel at privacy@karyopharm.com to exercise your opt out preferences. 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, for example, contract research organizations (CROs) or other businesses that are involved in clinical study management and drug development as is commonly done in our industry 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, which restricts their access, use and disclosure of Personal Data, solely to meet their contractual obligations in the performance of 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 Privacy Shield 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 Privacy Shield 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:

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

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 Privacy Shield Principles to the International Centre for Dispute Resolution®, the international division of the American Arbitration Association, a not-for-profit alternative dispute resolutions 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 http://go.adr.org/privacyshield for more information and to file a complaint.

Please note that if your complaint is not resolved through these channels, under limited circumstances, a binding arbitration option may be available before a Privacy Shield Panel. For additional information, please visit: https://www.privacyshield.gov/article?id=ANNEX-I-introduction.

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.

To the extent that Karyopharm receives or processes HR personal data from the EU for use in the context of the employment relationship under the Privacy Shield, 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 Privacy Shield Principles if third-party agents that it may engage to process Personal Data on its behalf do so in a manner inconsistent with the Privacy Shield 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 Privacy Shield’s requirements.

KaryoMeter Mobile Application Privacy Policy

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 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 the 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 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 who 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 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 by email at privacy@karyopharm.com. 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. Any information that was collected before you revoke your consent will continue to be used. This includes results and information obtained prior to such decision as well as the samples and data/results generated from your samples that have already been provided for the study purposes.

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 also may 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.

Further Information for Users in the European Economic Area

If you are a user in the European Economic Area, we process your personal data in the United States as data controller and in compliance with the European General Data Protection Regulation (“GDPR”).

For the avoidance of doubt, we collect “data concerning health” as defined in the GDPR.  Data concerning health means personal data related to the physical or mental health of a natural person, including the provision of health care services, which reveal information about his or her health status.

Legal Basis for Processing

When we process your personal data, we will only do so only when you have provided us with your consent.

Data subject rights You have the right to:

  • access personal data we hold about you;
  • request rectification or erasure of your personal data;
  • request the restriction the of processing of your personal data;
  • object to the processing of your personal data; and
  • data portability.

You may withdraw such consent at any time, as explained above.

If you would like to exercise any of your data subject rights under the GDPR, please contact us at privacy@karyopharm.com.

You have the right to lodge a complaint regarding our data processing with a supervisory authority. The EU Commission provides a list of supervisory authorities here: https://ec.europa.eu/justice/article-29/structure/data-protection-authorities/index_en.htm.

Automated Decision-making

Company does not make any decisions involving the use automated decision-making or profiling that significantly affect you.

Transfer of personal data

Our service providers or other third parties with whom Company may share your personal data from time to time, as described above, may be located abroad, and in particular outside the European Economic Area. In such case, Company will require them to take, in accordance with applicable legislation, all organizational and technical measures reasonably necessary to ensure an adequate level of protection of your personal data.

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, you can contact us at privacy@karyopharm.com or Karyopharm Therapeutics Inc., 85 Wells Avenue, Newton, MA 02459.

KaryoMPN Mobile Application Privacy Policy

Effective: [September 17, 2021] 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 the following information: calories burned, numbers of steps, distance walked, sleep cycle, sleep duration, weight, body mas index, fat mass, muscle mass, bone mass, and water percentage.  When you first download the Study App you will be asked for certain personal information, such as name, email address, and date of birth.

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, including in publications (although published material for use in science journals or conferences will contain no personal data – i.e., all data will be de-identified);
  • 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.
  • 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 the 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 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 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 by email at privacy@karyopharm.com.

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. All data and information that has already been collected will remain part of the research and will continue to be used.  This includes results and information obtained prior to such decision as well as the samples and data/results generated from your samples that have already been provided for the study purposes.

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 also may 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.

Further Information for Users in the European Economic Area

If you are a user in the European Economic Area, we process your personal data in the United States as data controller and in compliance with the European General Data Protection Regulation (“GDPR”).

For the avoidance of doubt, we collect “data concerning health” as defined in the GDPR.  Data concerning health means personal data related to the physical or mental health of a natural person, including the provision of health care services, which reveal information about his or her health status.

Legal Basis for Processing

When we process your personal data, we will only do so only when you have provided us with your consent.

Data subject rights

You have the right to:

  • access personal data we hold about you;
  • request rectification or erasure, where allowed, of your personal data;
  • request the restriction of the processing of your personal data;
  • object to the processing of your personal data; and
  • data portability.

You may withdraw such consent at any time, as explained above.

If you would like to exercise any of your data subject rights under the GDPR, please contact us at privacy@karyopharm.com.

You have the right to lodge a complaint regarding our data processing with the local supervisory authority set forth in your Consent Form.

Automated Decision-making

Company does not make any decisions involving the use automated decision-making or profiling that significantly affect you.

Transfer of personal data

Our service providers or other third parties with whom Company may share your personal data from time to time, as described above, may be located abroad, and in particular in the United States and outside the European Economic Area. In such case, Company will require them to take, in accordance with applicable legislation, all organizational and technical measures reasonably necessary to ensure an adequate level of protection of your personal data.

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, you can contact us at privacy@karyopharm.com or Karyopharm Therapeutics Inc., 85 Wells Avenue, Newton, MA 02459.