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Policies

Disclaimer of Endorsement

Last Update Date: 11/13/21

The INCLUDE Data Coordinating Center (“DCC”) comprises collaborating institutions supported by the National Institutes of Health (“NIH”) INCLUDE Project (“INCLUDE”) under Project Number U2CHL156291 administered by the National Heart, Lung and Blood Institute. All content, terms and conditions and policies associated with the DCC Data Hub and Website (collectively, “Services”). The views and opinions of authors expressed on the Services do not necessarily state or reflect those of the NIH or the U.S. government. Furthermore, the NIH does not endorse or promote any DCC entity or any of its products or services nor guarantees the products, services.

Terms and Conditions of Services

Last Update Date: 11/13/21

INCLUDE DCC shall comply with the Children’s Online Privacy Protection Act of 1998 (COPPA) which restricts the marketing of products and services online to children under 13. INCLUDE DCC is unable to prevent children under the age of thirteen (13) from visiting the INCLUDE DCC Website; however, no part of the Website is directed at or intended for persons under the age of thirteen (13). If you are under the age of thirteen (13), please do not access the Website at any time or in any manner. By providing personal identifiable information through the Website including, but not limited to, your name and email address, you represent and warrant that you are at least eighteen (18) years of age and that you agree to comply with the Privacy Policy. If, at any time, INCLUDE DCC learns that personally identifiable information has been collected from persons under the age of thirteen (13) without parental or legally authorized representative consent, INCLUDE DCC will take the appropriate steps to delete such information.

As a user of the Website you agree that you are 13 years of age or older  and understand what you are entering into when you visit the site or you have permission from a guardian and furthermore agree to the Terms and Conditions of Data Hub defined herein and where applicable the terms defined by the INCLUDE Data Hub Click-Through Agreement. Intended use of INCLUDE DCC page content is  for educational, research and DS-participant related purposes and focuses on the treatment and care of co-occurring conditions in DS populations.  All site visitors must comply with the following terms of use:

  1. My purpose for the use of INCLUDE Portal data is free from discrimination on the grounds of race, ethnicity, nationality, gender, age, physical and/or mental ability, sexual orientation, gender identity or expression, religion, or any other grounds that would impinge on an individual’s rights.
  2. I will acknowledge specific dataset(s) and/or applicable accession number(s) as well as the INCLUDE Data Hub in my dissemination of research findings, as applicable to the medium or type of dissemination.
  3. I will only share or distribute INCLUDE Portal data under terms commensurate with this agreement, and the data or derivatives of the data may not be sold, in whole or in part, to any individual at any point in time for any purpose.
  4. I will respect the privacy of research participants, and I will make no attempt to identify or contact individual participants or groups from whom data were collected or to generate information that could allow participants’ identities to be readily ascertained.
  5. I agree to provide a brief statement regarding my intended use of the data on the INCLUDE Portal with my name and affiliation which will be publicly displayed for the purpose of transparency and collaboration.
  6. I understand that participation in the INCLUDE community is voluntary and may be terminated by the INCLUDE Portal Administrator. I will report any actual or suspected violation of this agreement, even if unintentional, to the INCLUDE Portal Administrator. I understand that the INCLUDE Portal Administrator may take action to remedy any actual or suspected violation and/or report such behavior to the appropriate authorities.  I also understand that the INCLUDE Portal Administrator may immediately suspend or terminate my access to the INCLUDE Portal if there is an actual or suspected violation of this agreement.

DCC Terms and Conditions of Services may be changed at any time via a public posting of revisions to the Services. As a user, you agree to review the Terms and Conditions of Services and Privacy Policies 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 with and to be bound by all of the terms and conditions and policies as posted on the Services at the time of your access or use, including the Privacy Policies then in effect.

If you have any questions about these terms, conditions or the practices of this site or any of the other Services, including a copy of our Remediation Policy should a user be found in violation of these terms, please contact us at support@includedcc.org.

Privacy Policy

Last Update Date: 11/13/21

The INCLUDE Data Coordinating Center (“DCC” or “we”) has created this Privacy Policy to demonstrate its commitment to privacy and transparency of practices. This Privacy Policy explains the DCC’s information-gathering and dissemination practices for the DCC Website and Data Hub (collectively, “Services”). By accessing the Services, you consent to the practices and terms of this Privacy Policy. Limited data is collected about your visit to 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 DCC Collects

“Personal Information” means any information that can be used to identify you, directly or indirectly, as an individual person. The DCC collects Personal Information when you visit any of the Services, send DCC an email, respond to a survey, provide online feedback, register for the Data Hub, subscribe to one of the DCC’s online publications or email newsletters, or otherwise communicate with us. The DCC 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 DCC collects Personal Information that you enter through the Services or give to the DCC in another way. For example:

  • When you access the Services, the DCC 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 DCC 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 DCC websites, the DCC 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 DCC Obtains from Third Party Sources

The DCC 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 DCC allows you to register and login to the Services through a third-party platform, the DCC 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 DCC uses third party platforms that collect Personal Information about you that the DCC 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.

See how the DCC uses your information

Information the DCC 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 DCC 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 DCC 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 DCC Uses Your Information

The DCC uses information, including Personal Information, for internal and service-related purposes. The DCC may use and retain any data that it collects to provide and improve any of the Services. The DCC 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 DCC may use information, including Personal Information, to show or send you information about INCLUDE DCC (See “Information the DCC Collects” section above). The DCC may anonymize or aggregate data collected through the Services and use and disclose it for any purpose.

How the DCC Shares Your Information

Only members of the DCC staff, its approved contractors and its approved vendors have access to the data collected by the Services. The DCC 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 DCC may share any information it receives with vendors and service providers it uses to help provide and improve the Services. For example, the DCC may disclose information to the service providers that help host the Services or send its emails.

The DCC may allow access to data collected by the Services to send you information related to the DCC.

The DCC 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 DCC 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 DCC cannot control how the recipient entities may use or disclose such information.

Children’s Privacy

The DCC 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 DCC learns that a child under 13 has created an account, the DCC 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 DCC. 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 DCC 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 .
  • ORCID: Users have the option to integrate their Data Hub login with ORCID to allow users to “login with ORCID.” The Services will access your basic profile information including your name and email address. You may visit ORCID’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.
  • Usersnap: Usersnap is the widget in the lower right hand corner of every page. The Services use Usersnap to allow users to provide feedback on their experience on the various pages within the environments by taking screenshots and adding comments. The Usersnap widget may ask for your name and email address. It also collects browser and operating system information to help us troubleshoot any reported issues. You may visit Usersnap’s privacy policy.
  • The Services, specifically the Data Hub, integrates with CAVATICA, an cloud-based analytics platform developed by Seven Bridges by allowing users to push their selected genomics files to CAVATICA for analysis. You may visit CAVATICA’s privacy policy.
  • Wordpress (Gravatar): The Services integrate with Gravatar to provide profile pictures for users’ Data Hub profiles. You may visit Gravatar’s privacy policy.
  • Mailchimp The Services use Mailchimp to provide email updates, utilizing opt-in email address information. You may visit Mailchimp’s privacy policy.

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 INCLUDE DCC, you may request unsubscription at the link below or by emailing support@includedcc.org.

Unsubscribe here

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

Linda Crnic Institute for Down Syndrome
RE: INCLUDE Data Coordinating Center
12800 East 19th Avenue
Mail Stop 8608
Aurora, CO 80045

Passwords and Tokens

You are responsible for taking all reasonable steps to ensure that no unauthorized person shall have access to your DCC passwords, accounts, or security tokens. 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 DCC account and password; (3) promptly inform us of any need to deactivate a password or token. You grant to the DCC 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 DCC 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 DCC 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 DCC 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 of 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: 11/13/21

Documents and/or data available from or provided by any Services is provided on an AS-IS basis and may change over time. The DCC and its members do not warrant 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 INCLUDE Portal 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 support@includedcc.org.

Linda Crnic Institute for Down Syndrome
RE: INCLUDE Data Coordinating Center
12800 East 19th Avenue
Mail Stop 8608
Aurora, CO 80045

Last Update Date: 11/13/21

Cookies & Similar Technologies

The INCLUDE Data Coordinating Center (“DCC”) 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 it, among other things, to store your preferences and settings, enable you to sign-in, combat fraud and analyze how our platform is performing.

The DCC 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:

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 support@includedcc.org.