Privacy Policy

The INCLUDE DS-Biorepository (“DS-Biorepository” or “we”) has created this Privacy Policy to demonstrate its commitment to privacy and transparency of practices. This Privacy Policy explains the information gathering and dissemination practices for the DS-Biorepository website and data (collectively, “Services”). By accessing the Services, you consent to the practices and terms of this Privacy Policy. Limited data is collected about your visit when accessing any of our Services in order to help us better understand public use of the sites, and to improve and continue to make our Services more useful to visitors. This page describes the information that is automatically collected and stored. 

Information the DS-Biorepository Collects​ 

“Personal Information” means any information that can be used to identify you, directly or indirectly, as an individual person. The DS-Biorepository collects Personal Information when you visit any of the Services, send the DS-Biorepository an email, respond to a survey, provide online feedback, subscribe to one of the DS-Biorepository’s online publications or email newsletters, or otherwise communicate with us. The DS-Biorepository also collects information, such as anonymous usage statistics, by using cookies, server logs, and other similar technology as you use the Services. 

Information Provided by You​ 

The DS-Biorepository collects Personal Information that you enter through the Services or give to the DS-Biorepository in another way. For example: 

When you access the Services, the DS-Biorepository may collect: 

Contact information, such as your name, email address, mailing address, and telephone number 

  • Employment-related information, such as employer, department, job title and business contact information 
  • Account information, such as account name, password, security question responses, and a unique identification number 
  • Linked account information, such as social media accounts (e.g., LinkedIn) or credentialing web services (e.g., eRA Commons ID) based on registration information you provide in your user profile 
  • Product interest information, including products and areas of interest 
  • When you fill out a survey, the DS-Biorepository collects, depending on the survey: 
  • Satisfaction with an event or course, product usage, and product satisfaction 
  • Other information in response to solicited questions, as you voluntarily contribute 
  • When you contribute information to the DS-Biorepository websites, the DS-Biorepository collects: 
  • User generated content, such as content you post on our blogs or elsewhere on our website, or content you post on social media platforms 

Any information you contribute spontaneously or in response to questions 

Information the DS-Biorepository Obtains from Third Party Sources​ 

The DS-Biorepository collects Personal Information about individuals from a number of third-party sources. 

Business Partners and Service Providers: Our business partners and service providers, such as contacts database and website hosting providers, collect Personal Information and share some or all of this information with us. 

Single Sign-On: When the DS-Biorepository allows you to register and login to the Services through a third-party platform, the DS-Biorepository collects information from the third-party platform permitted under the settings and privacy policy of that platform. 

Publicly Available Sources: When you register to use the Services, the DS-Biorepository uses third party platforms that collect Personal Information about you that the DS-Biorepository does not otherwise collect (including contact information, employment-related information and product interest information) from social media platforms (for example, Facebook), and other publicly available databases. 

Information the DS-Biorepository Collects Automatically​ 

Log File Data 

The Services collect domain names of site visitors, as well as aggregate information about site traffic and server load. Additional processes store IP addresses, browser information, location, and device statistics of visitors for auditing and security purposes. This information is used strictly to maintain and improve the Services. 

Cookies 

The Services use “cookies” during site visits. The “cookie,” which is a small text file stored in temporary memory, is used by our web applications for usability purposes and to comply with subscription and settings preferences that our visitors have given us. The Services also uses “cookies” on a limited basis to measure user interactions with the Services through Google Analytics. You can turn off cookies in your browser preferences at any time without affecting site performance, if you wish to do so. For more information, including how to control your privacy settings, read our Cookie Policy. 

Online Comment Forms​ 

Please note that the DS-Biorepository will not intentionally share the contents of any email feedback or comment form with any third party. However, due to the nature of electronic communications, the DS-Biorepository cannot and does not provide any assurances that the contents of your e-mail will not become known or accessible to third parties. 

You are urged not to provide any confidential information about you, your health, or other patients’ health via electronic communication. If you do so, it is at your own risk. 

How the DS-Biorepository Uses Your Information​ 

The DS-Biorepository uses information, including Personal Information, for internal and service-related purposes. The DS-Biorepository may use and retain any data that it collects to provide and improve any of the Services. The DS-Biorepository may send email to the email address you provide to it for sending you email for informational and operational purposes, such as account management, customer service, system maintenance, and other Services-related purposes. The DS-Biorepository may use information, including Personal Information, to show or send you information about the DS-Biorepository (See “Information the DS-Biorepository Collects” section above). The DS-Biorepository may anonymize or aggregate data collected through the Services and use and disclose it for any purpose. 

How the DS-Biorepository Shares Your Information​ 

Only members of the DS-Biorepository staff, its approved contractors and its approved vendors have access to the data collected by the Services. The DS-Biorepository may share information with its third-party vendors and service providers, to comply with legal obligations, to protect and defend our rights and property, and with your permission. The DS-Biorepository may share any information it receives with vendors and service providers it uses to help provide and improve the Services. For example, the DS-Biorepository may disclose information to the service providers that help host the Services or send its emails. 

The DS-Biorepository may allow access to data collected by the Services to send you information related to the DS-Biorepository. 

The DS-Biorepository may access, preserve, and disclose collected information if it believes doing so is required or appropriate to: comply with law enforcement requests and legal process, such as a court order or subpoena; respond to your requests; comply with the law; or protect your, our, or others’ rights, property or safety. 

If the DS-Biorepository is involved in a transition of service to another provider, your information may be disclosed in connection with the negotiation of such a transaction, and/or transferred as part of such a transaction as permitted by law and/or contract. The DS-Biorepository cannot control how the recipient entities may use or disclose such information. 

Children’s Privacy​ 

The DS-Biorepository is committed to protecting the privacy of children. The Services are intended for adults and young adults ages 13 and over. It is not intended for or designed to attract persons under the age of 13. Registration by any person to be under the age of 13 is not permitted and no part of the Services are directed to children under 13. If the DS-Biorepository learns that a child under 13 has created an account, the DS-Biorepository will promptly take steps to delete such information and terminate the child’s account. 

Other Sites​ 

Our privacy policies apply only to your use of the Services. The Services contain links and integrations to other sites, including sites that may indicate relationships or collaborations with the DS-Biorepository. At times, in support of technical integrations, you may be required to provide your email address and name to third parties to fully use and/or access all Services. The DS-Biorepository is not responsible for the privacy practices of such other sites. You should read and review the privacy policies of each site you visit to determine what information that site may be collecting about you. Below are the privacy policies for the third-party websites & services that the Services currently integrate with: 

  • Google: Users have the option to integrate their Data Hub login with Google to allow users to “login with Google.” The Services will access your basic profile information including your name and email address. You may visit Google’s privacy policy . 
  • Google Analytics & reCaptcha: The Services use Google Analytics to monitor user interaction and use of the sites. See Log File Data above for information on what is collected with Google Analytics. Additionally, the Services uses google reCaptcha when submitting forms to prevent spam bots from submitting forms. You may visit Google’s privacy policy. 
  • Constant Contact: The Services use Constant Contact to provide email updates, utilizing opt-in email address information. You may visit Constant Contact’s privacy policy. 

E-mail Communications, Newsletters and Related Services​ 

The Services provide you with the opportunity to receive email communications. Once you have decided to receive such communications, you may later decide to stop receiving them. If you are a member of our online community and want to stop receiving communications from the DS-Biorepository, you may request to unsubscribe at the link below or by emailing info@dsbiorepository.org. 

Unsubscribe here 

You may also send a message to info@dsbiorepository.org or send mail to the following postal address: 

Linda Crnic Institute for Down Syndrome 
RE: INCLUDE DS-Biorepository 
12800 East 19th Avenue 
Mail Stop 8608 
Aurora, CO 80045 

Passwords and Accounts 

You are responsible for taking all reasonable steps to ensure that no unauthorized person shall have access to your DS-Biorepository passwords and/or accounts. It is your sole responsibility to (1) control the dissemination and use of activation codes and passwords; (2) authorize, monitor and control access to and use of your DS-Biorepository account and password; (3) promptly inform us of any need to deactivate a password. You grant to the DS-Biorepository and to all other persons or entities involved in the operation of the Services the right to transmit, monitor, retrieve, store and use your information in connection with the operation of the Services. The DS-Biorepository cannot and does not assume any responsibility or liability for any information you submit, including to our online community, or your or third parties’ use or misuse of information transmitted or received using the DS-Biorepository tools and services, including the online community. 

Changes to Our Privacy Policy​ 

Just as with the other terms and conditions associated with the Services, the DS-Biorepository may change the terms and conditions of its Privacy Policy at any time by posting revisions on the Services. You agree to review the Privacy Policy each time you use the Services so that you are aware of any modifications made to these policies. By accessing or using the Services, you agree to be bound by all the terms and conditions of the Agreement as posted on the Services at the time of your access or use, including the Privacy Policy then in effect. 

Disclaimer of Liability​ 

Last Update Date: 10/13/25 

Documents and/or data available from or provided by any Services are provided on an AS-IS basis and may change over time. The DS-Biorepository and its members do not guarantee or assume any legal liability or responsibility for the accuracy, completeness or usefulness of any information, apparatus, product or process provided. Furthermore, content provided on the DS-Biorepository is for informational purposes only and is not intended to be a substitute for independent professional medical judgement, advice, diagnosis or treatment. Where applicable users are urged to consult with a qualified physician for diagnosis and for answers to any personal questions. 

Contact Information​ 

If you have any questions about these privacy policies or the practices of this site, please contact us at info@dsbiorepository.org. 

Linda Crnic Institute for Down Syndrome 
RE: INCLUDE DS-Biorepository 
12800 East 19th Avenue 
Mail Stop 8608 
Aurora, CO 80045 

DS-Biorepository Cookie Policy​ 

Last Update Date: 10/13/25 

Cookies & Similar Technologies​ 

The INCLUDE DS-Biorepository (“DS-Biorepository”) uses cookies (small text files placed on your device) and similar technologies to provide its websites and online services and to help collect data. Cookies allow, among other things, storage of your preferences and settings, enable you to sign-in, combat fraud and analyze how our platform is performing. 

The DS-Biorepository also uses web beacons to help deliver cookies and gather usage and performance data. 

These small data files or graphic files serve various functions: 

  • Strictly Necessary: Necessary to deliver our services (for example, essential cookies) 
  • Performance and Functionality: Enhance the performance and functionality of our services but are non-essential to their use (for example, performance and functionality cookies) 
  • Analytics and Customization: Allow us to understand the effectiveness of our services, as well as to customize our services based on this information (for example, customization cookies and analytical web beacons) 

How can you control cookies and similar technologies? 

Browser Controls: Most web browsers allow some control of most cookies through the browser settings. For more information about how to reject, disable or delete cookies, please review your browser’s help menu or visit www.aboutcookies.org or www.allaboutcookies.org. If you choose to reject cookies, you may not be able to take advantage of certain features, services, applications or tools available through the Services that are only available through the use of these technologies. 

You can control the use of certain cookies and related technologies by: 

  • Setting or amending your web browser controls to accept or refuse cookies (please visit your browser’s help menu for more information) 

If you choose to reject certain cookies, you may still use our websites and online services, though your access to some functionality and features may be restricted. If you have any questions regarding our use of cookies and other related technologies, please contact us at info@dsbiorepository.org.