Hibiscus Study™ Website Privacy Notice

Last Updated: January 12, 2022

Forma Therapeutics, Inc. (“Forma”, “we”, “our”, or “us”) respects your privacy. This Privacy Notice describes our practices in connection with the information collected through our Hibiscus Study Website (the “Website”) that has been developed by Praxis Communications LLC (“Praxis”) on our behalf. We are providing you access to the Website in connection with clinical research study no. 4202-HEM-301, entitled “An Adaptive, Randomized, Placebo-controlled, Double-blind, Multi-center Study of Oral etavopivat, a Pyruvate Kinase Activator in Patients with Sickle Cell Disease” (“Hibiscus” or the “Study”). The Study will be facilitated by our contracted third parties that include Praxis and clinical research sites participating in the Study (each a “Research Site”) (collectively “Contracted Parties”). The Website enables a potential Study subject to be prescreened for eligibility to participate in the Study and if eligible, to have his or her User Information (as defined below) provided to a Research Site. The Website may collect information from a potential Study subject, a referring physician of whom the potential Study subject is a patient (“Referring Physician”), or an acquaintance of the potential Study subject (“Acquaintance”). The Website also enables a physician or Study doctor at a Research Site, a Referring Physician, a potential or enrolled Study subject, or an Acquaintance to review information about the Study. The Website is not intended for use by any persons other than potential or enrolled Study subjects or Acquaintances thereof, physicians or Study doctors at Research Sites, or Referring Physicians. By accessing and using the Website, you agree to the terms of this Privacy Notice.

This Privacy Notice applies only to personal information collected by the Website. If you are a potential Study subject, any information about you collected outside the Website in connection with the Study will not be governed by this Privacy Notice and instead will be treated in accordance with the informed consent form you will execute before beginning participation in the Study (the “Informed Consent”) and any privacy policy that is linked to other electronic or digital tools or platforms into which you provide your User Information (as defined below) use as part of the Study.

I. Information you or the research site provide

The Website collects the personal information you choose to provide (“User Information”). If you are a potential Study subject, a Referring Patient, or an Acquaintance, the Website may also collect User Information about you and the potential Study subject that will be provided to a Research Site. User Information may include, for example:

  • Your phone number and/or email.
  • Your name and year of birth.
  • Other information collected as part of the prescreening process.

If you provide or permit us to collect any information relating to another person, you are telling us that you have the authority to do so and to permit us to use the information as described in this Privacy Notice. The User Information that you provide through the Website, such as your name and email address, is provided directly to the Research Site only, and is not provided to Forma.

II. How we use and disclose the information you or the research site provide

We or our Contracted Parties may use User Information to:

  • Provide information to a Research Site in connection with the Study.
  • To ask for your consent to collect your medical records in order to assess your eligibility for the Study.
  • To better understand your needs in order to improve the Website’s functionality.
  • Respond to your inquiries and fulfill your requests, such as to send you notifications.
  • Send administrative information to you, such as information regarding the Website and changes to our terms.
  • Personalize your experience with the Website and allow us to deliver the content.

We may disclose User Information to:

  • Research Sites, which will use and disclose your User Information like other information collected during the screening process for determining eligibility of and enrolling Study subjects.
  • Our affiliates, for the purposes described in this Privacy Notice.
  • Our Contracted Parties including third-party service providers, to permit them to provide authorized services on our behalf, such as medical records retrieval (with your consent); data analysis; information technology and related infrastructure provisioning; customer service; email delivery; auditing; and other approved services.
  • A third party, in the event of any reorganization, merger, sale, joint venture, assignment, transfer or other disposition of all or any portion of our business, assets or stock (including in connection with any bankruptcy or similar proceedings).

We or our Contracted Parties may also use and disclose your User Information as we believe to be necessary or appropriate to:

  • Comply with applicable law, including laws outside your country of residence.
  • Comply with legal process.
  • Respond to requests from public and government authorities, including the U.S. Food & Drug Administration and similar authorities outside of the United States.
  • Enforce our terms and conditions.
  • Protect our operations, or those of any of our affiliates.
  • Protect our rights, privacy, safety or property, and/or that of our affiliates, you or others.
  • Allow us to pursue available remedies or limit the damages that we may sustain.

We may aggregate your User Information from multiple sources, including web analytics services such as Google Analytics and other sources that provide analytics on study-wide recruitment. If we do this, we may use and disclose such aggregated information for any purpose. Aggregated information does not personally identify you or any other user.

III. Information collected automatically

We or our Contracted Parties may use cookies and other technologies to recognize you as you use or return to the Site so that we can understand how the Website is used and personalize and enhance your experience. These technologies collect certain information automatically, such as:

  • Information about your device, such as your screen resolution, operating system, device manufacturer and model, language and browser type. We use this information to ensure that the Site functions properly.
  • Information about your use of the Website, including content viewed, features used and the dates and times of your interactions with the Website. We use this information to understand how users engage with the Website and to customize and improve the Website experience.

If we combine the information described in this section with information that is deemed “personal information” under applicable law, we will treat the combined information as User Information as described above, for as long as it is combined, in compliance with applicable laws or regulations.

IV. Do not track

Do Not Track (“DNT”) is a privacy preference that users can set in their web browsers. When a user turns on DNT, the browser sends a message to web applications requesting that they not track the user. At this time, we and our Contracted Parties do not respond to these signals. For information about DNT, visit www.allaboutdnt.org.

V. Data retention

Through our Contracted Parties, we may retain User Information for as long as the Website remains in use, or as long as we are legally required or permitted to do so. When deciding how long to retain User Information, we take into account our legal and regulatory obligations, the amount, nature, and sensitivity of the User Information, the potential risk of harm from unauthorized use or disclosure of the User Information, the purposes for which we process the User Information described above and whether we can achieve those purposes through other means. We may also retain the User Information to investigate or defend against potential legal claims.

VI. Third-party services

This Privacy Notice does not address, and we are not responsible for, the information collection, use, disclosure or security practices, or other practices, of any third party, including any third party operating a service to which the Website links. The inclusion of a link within the Website does not imply our endorsement of the linked service.

VII. Information security

We seek to use reasonable organizational, technical and administrative measures to protect the information you provide to us. Unfortunately, no data transmission or storage system can be guaranteed to be completely secure. If you have reason to believe that your interaction with us is no longer secure, please immediately notify us at gdprprivacy@formatherapeutics.com.

VIII. Your privacy controls

You may stop all collection of information by the Site by closing the Website. If you revisit the Website, we may continue to collect User Information that you enter into the Site and other information collected automatically as described above.

IX. Use by minors

We do not knowingly collect personal information on the Website from individuals under the age of eighteen (18) without consent of the individual’s parent or legal guardian. If you are less than eighteen (18) years of age, you will need your parent’s or legal guardian’s permission to use the Website. If you are under the age of eighteen (18) please consult with your parent or legal guardian before using the Website.

X. Cross-border transfer

The Website is controlled and operated by us from the United States and is not intended to subject us to the laws or jurisdiction of any state, country or territory other than that of the United States. This Website is not intended to be used by persons who are not residents of the United States.

XI. Updates

From time to time, we may update this Privacy Notice. Any changes will become effective when we post the revised Privacy Notice in the Website. Your use of the Website following these changes means that you accept the revised Privacy Notice. This Privacy Notice was last updated as of the “Last Updated” date shown above.

XII. Contact us

Please contact us if you have any questions:

Forma Therapeutics, Inc.
300 North Beacon Street, Suite 501
Watertown, Massachusetts 02472, United States