The Clinical Research Data Sharing Alliance (CRDSA) is committed to protecting the privacy of all personal information it collects and uses. It designed this Privacy Policy (“Policy”) to be compliant with applicable legislation, established guidelines for business organizations, and its own internal policies and procedures. This Policy applies to any information that we process through our website (“Site”), which is located at https://crdsalliance.org/, as well as any information that we provide through any of our other online or offline offerings (collectively with the Site, the “Services”).

Key Terms. Throughout this Privacy Policy, we use a few specialized terms. When we use the term “Personal Information” in this Privacy Policy, we mean information by which you could be identified, like your name, username, postal address, e-mail address, or telephone number. The term “User Information” incorporates all of your Personal Information and any other forms of information discussed in this Privacy Policy, such as information about the devices you use to access our Services.

Scope. This privacy policy applies to all Personal Information processed by full-time and part-time employees, members and volunteers when acting on behalf of CRDSA, contractors, and partners doing business on behalf of CRDSA.

How We Use Your Data. When you use any of the features of our Services, you may provide us with certain Personal Information. We collect and store this Personal Information, any updates to such information that you send us, and any modifications that we make to such information in line with the terms of this Privacy Policy. Examples of how we use or disclose your Personal Information include:

  • To allow our service providers or agents to provide services to us;
  • To provide our Services to you (Including download links and newsletters);
  • To send you other information that may be useful to you;
  • To provide access to member-only resources, including access to member-restricted user portals, websites, or work group areas;
  • To use or share your information with third parties when we believe, in our sole discretion, that doing so is necessary:
    • To provide it to our attorneys, accountants, regulators, auditors, or other advisors;
    • 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;
    • To establish, protect, or exercise our legal rights or defend against legal claims; or
    • To facilitate the financing, securitization, insuring, sale, assignment, bankruptcy, or other disposal of all or part of our business or assets.

Third-party service providers. We use third-party service providers that perform services on our behalf, including web-hosting companies. Service providers may collect and/or use your User Information, to assist us in achieving the purposes discussed above.

Storage and retention.  We will keep your User Information for as long as we need it for the purposes set out above, and so this period will vary depending on your interactions with us.  For example, where we have a professional relationship with you we will retain your details throughout the duration of that relationship. Where we no longer need to keep your information, we will delete it. Please note that where you unsubscribe from our marketing communications, we will keep a record of your email address to ensure we do not send you marketing emails in the future.

Security. We employ and maintain technology and security measures designed to protect your information. When you submit sensitive information to our Services, that information is subject to a variety of protections, including firewalls and password-protected features for certain website options. However, no data transmission over the Internet can be guaranteed as 100% secure. As a result, while we strive to protect your information, we cannot ensure or warrant the security of any information you transmit to us or receive from us.

Marketing. We may use your Personal Information to send you marketing messages. If you do not want us to use your information as described herein, then please e-mail us at privacy@crdsalliance.org or use the unsubscribe option included with any marketing communications.

Please be aware that without the use of your information, we may not be able to provide you the products, services, or information you request. If you choose to opt-out of marketing, we may still contact you with service messages from time to time (e.g. information about your legal rights).

Your Data Protection Rights. Our organization would like to make sure you are fully aware of all of your data protection rights. Every user is entitled to the following:

  • The right to access – You have the right to request our organization for copies of your personal data.
  • The right to rectification – You have the right to request that our organization correct any information you believe is inaccurate. You also have the right to request our organization to complete information you believe is incomplete.
  • The right to erasure – You have the right to request that our organization erase your personal data, under certain conditions.
  • The right to restrict processing – You have the right to request that our organization restrict the processing of your personal data, under certain conditions.
  • The right to object to processing – You have the right to object to our organization’s processing of your personal data, under certain conditions.
  • The right to data portability – You have the right to request that our organization transfer the data that we have collected to another organization, or directly to you, under certain conditions.

If you make a request, we have one month to respond to you. If you would like to exercise any of these rights, please contact us at our email: privacy@CRDSAlliance.org

Children’s Privacy. We do not knowingly collect Personal Information from children under 13 on our Services.

Cookies. We use cookies on the Site. Cookies are small files that are stored on your computer (or other device) by your web browser. A cookie allows the Site to recognize whether you have visited before and may store user preferences and other information. For example, cookies can be used to collect or store information about your use of the Site during your current session and over time (including the pages you view and the files you download), your computer’s or device’s operating system and browser type, your Internet service provider, your domain name and IP address, your general geographic location, the website that you visited before visiting the Site, and the link you used to leave the Site.

If you are concerned about having cookies on your computer, you can set your browser to refuse all cookies or to indicate when a cookie is being set, allowing you to decide whether to accept it. You can also delete cookies from your computer or device. However, if you choose to block or delete cookies, certain features of the Site may not operate correctly.

Privacy Policy of Other Websites. Our organization’s website contains links to other websites. Our privacy policy applies only to our website, so if you click on a link to another website, such as our member site (https://members.crdsalliance.org/), you should read their privacy policy.

Your California Privacy Rights. Under California Law, California residents have the right to request in writing from businesses with whom they have an established business relationship,

  • A list of the categories of Personal Information, such as name, e-mail and mailing address and the type of services provided to the customer, that a business has disclosed to third parties (including affiliates that are separate legal entities) during the immediately preceding calendar year for the third parties’ direct marketing purposes.

and

  • The names and addresses of all such third parties.

To request the above information, please contact us at privacy@crdsalliance.org or write to us at (with a reference to California Disclosure Information):

CRDSA c/o Genentech

1 DNA Way, Mail Stop 408A

South San Francisco, CA 94080

This privacy policy may be amended by us at any time. Please check this page periodically for any updates. It was last updated on October 16, 2024.

 

Disclaimer and Limitation of Liability

CRDSA DISCLAIMS ANY AND ALL WARRANTIES, WHETHER EXPRESS OR IMPLIED INCLUDING (WITHOUT LIMITATION) ANY IMPLIED WARRANTIES OF MERCHANTABILITY OR FITNESS FOR A PARTICULAR PURPOSE. IN NO EVENT WILL CRDSA BE LIABLE TO ANY PARTY FOR ANY DIRECT, INDIRECT, SPECIAL, OR OTHER CONSEQUENTIAL DAMAGES FOR ANY USE OF THIS CONTENT.