DS-Connect®: The Down Syndrome Registry ("DS-Connect") is committed to protecting the privacy of our participating members. To better protect your privacy, we provide this notice explaining our information practices. To make this notice easy to locate, it is available as a link on the DS-Connect home page. We define personal information to include name(s), email address, mailing address, survey responses, registry information and non-public information included in your correspondence with us.
When you contact the DS-Connect Registry Coordinator at info@ds-connect.org, your email address and other information included in your email may be forwarded to the appropriate person(s) within DS-Connect for a response. A copy of your correspondence may be retained at the DS-Connect office.
The DS-Connect registry has established and maintains a mailing database. The mailing list includes families of individuals with DS, friends, physicians, scientists, contributors and others interested in Down syndrome. DS-Connect will never release our mailing list or the names of our member families to any outside organization or third party unless required to do so by law. However, if an outside organization sends us information for distribution to DS-Connect registry participants, we may post it on our website or send it to you in case you have indicated to do so in the contact preferences page.
Information determined to be confidential can only be released by written or verbal permission by the subject of the information or organization that owns the information. Information may be released if required by law, such as in response to an investigation or subpoena. DS-Connect registry website provides links to other sites that may be of interest. Note that neither DS-Connect nor the University of Colorado are responsible for the privacy practices or content of other such websites.
DS-Connect is firmly committed to maintaining the confidentiality of your personal information in all of our activities. Every reasonable effort will be made to maintain the privacy and security of all personal information in our possession. Access to personal information will be limited to the National Institutes of Health ("NIH") and the University of Colorado personnel who are working directly on DS-Connect. All individuals will be instructed of their obligations under Federal confidentiality and security requirements.
You must read this Privacy Policy (the "Privacy Policy") and the Website (defined below) terms of use (the "Terms and Conditions") prior to using any portion of the DS-Connect Website or Services located at www.ds-connect.org. By using the Website, you agree to all the terms of the Privacy Policy and Terms and Conditions. If you do not agree with the terms of this Privacy Policy, you may not use any portion of the Website.
The DS-Connect registry is owned by the NIH and operated under contract by the University of Colorado. The NIH and the University of Colorado respect your privacy and have written the Privacy Policy so that you are aware of the information the DS-Connect collects from you, how that information is protected, and how it is used. If you have any questions or comments regarding the Privacy Policy, or you feel that DS-Connect is not abiding by its posted Privacy Policy, please contact us at: info@ds-connect.org
1. Purpose
This chapter establishes policies and procedures for ensuring the privacy and protection of personal information collected, stored, used, maintained and disseminated via the NIH websites. This policy applies to the NIH Internet websites that are developed and/or maintained by the NIH staff or by contract personnel. This policy does not apply to internal agency activities (such as on intranets, applications, or interactions that do not involve the public) or to activities that are part of authorized law enforcement, national security, or intelligence activities.
This Privacy Policy outlines the type of information DS-Connect collects from the users of the registry. We reserve the right to modify the Privacy Policy at any time, and without prior notice, by posting amended terms and conditions on the DS-Connect Website. We encourage you to review the Privacy Policy periodically for any updates or changes.
2. Collection, Use and Disclosure of Information
a. Collection of Information. All information you provide to DS-Connect will be maintained in a secure database, and any information that could identify you will not be shared without your express written consent, unless otherwise required by law.
b. Use and Disclosure of Information. The goal of this registry is to make the information you provided searchable, while protecting your identity. De-identified data (information where all personal identifiers such as name, address, email) gathered from this profile will be made available to registrants in the hope that analyses of a substantially larger database will support breakthroughs and clinical trials that could lead to better treatments and care management.
c. At any time, you have the right to withdraw your information from DS-Connect. You may exercise this right by contacting the DS-Connect Registry coordinator at info@ds-connect.org and your account will be deactivated and the identifying information in your profile will be removed. Please note that any de-identified data accessed before your request for removal will however not be able to be retrieved.
3. Protection of User Information
All users are required to review and abide by the Website Terms and Conditions and the Privacy Policy. We employ best practices from our networking to our secure servers to protect data from intrusion.
Where you use passwords, ID numbers, or other special access features on the Website, you should take special care to safeguard them.
The HIPAA privacy rules and HIPAA security rules mandate that covered entities have in place appropriate policies and procedures to protect the confidentiality and security of protected health information. In compliance with these regulations, the database security features of the University of Colorado target multiple levels including the data element (e.g., restricted access to fields), user (e.g., password authentication access), application (e.g., role-based access to features, access audit trails), and hosting services (e.g., firewall, secure sockets layer). Taken together, these features ensure access control, audit control, data integrity, user authentication, and transmission security. Administrative users of DS-Connect ensure exported datasets are de-identified as defined in the HIPAA privacy regulation [45 C.F.R. §164.514 (b)(2)].
Participant medical information will be stored electronically within DS-Connect. The database design is such that participant identifiable information is kept in data tables separate from the medical information.
DS-Connect de-identified data also may be requested by physicians/study centers and other interested parties to conduct research on the prevalence of clinical manifestations and/or to determine numbers of Registry participants who may be eligible for participation in ongoing or upcoming studies or clinical trials. Such requests will be reviewed by the Registry coordinators. The DS-Connect coordinators will review requests for data, and such requests and approvals will be documented. Any individual listings generated from participant data and provided to such external entities will use only a subject identification number to protect the identity of participants.
Participant information will be stored in the DS-Connect for an indefinite period of time. If for some reason the registry is closed at any time, the information would be retained on a secure the NIH database.
4. Ownership of Information
All of the information you provide to DS-Connect in connection with the Website is owned by you. You agree to grant DS-Connect the right to maintain, use and disclose your de-identified data as set forth in this Privacy Policy and DS-Connect Website Terms and Conditions. Your information may contribute to the development of inventions or commercial products from which others may derive economic benefit. You will have no rights to any inventions, commercial products or other such discoveries and you will receive no economic benefit.
5. Website Links
The DS-Connect Website may contain links to other the NIH websites and the DS Registry members website. This Privacy Policy applies solely to information collected on or submitted to the Website. DS-Connect is not responsible for the privacy practices of other sites linked to the Website. DS-Connect encourages users to read the privacy policies of websites and third-party advertisers when they connect to them through the Website.
6. Communications from DS-Connect
From time to time, the NIH, DS-Connect, or other related entities will notify users of updates and other valuable information about the DS-Connect and related clinical and research information. By using the DS-Connect Website, or registering or subscribing for services provided on or through the Website, users consent to being contacted by the DS-Connect team at info@ds-connect.org and to receiving such updates and information. DS-Connect team will follow best practices with respect to email communications, security and privacy.
7. Required Disclosures
You understand and agree that the DS-Connect may disclose information provided by you if in its good faith belief that such disclosure is required by applicable law.
8. Contact Us; Member Accounts
If you elect to contact DS-Connect through contact information provided on the DS-Connect Website, or register for an account, you may be asked for any of the following: name, password, e-mail address, e-mail subject and a message containing your inquiry (in the case of a "contact us" inquiry), and certain profile and account information (in the case of a member account registration). DS-Connect stores this data in order to reply to the submitted inquiry or to establish and service the member account. The submitted information is then subject to the terms detailed in this Privacy Policy.
9. Children Under The Age Of Thirteen (13)
DS-Connect 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. The NIH "Kid's Pages" shall comply with the following standards set forth in the COPPA. DS-Connect is unable to prevent children under the age of thirteen (13) from visiting the DS-Connect 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 e-mail address, you represent and warrant that you are at least at least eighteen (18) years of age and that you agree to comply with the Privacy Policy. If, at any time, DS-Connect learns that personally identifiable information has been collected from persons under the age of thirteen (13) without parental or legally authorized representative consent, DS-Connect Registry will take the appropriate steps to delete such information.
10. Change of Control
In the event that the University of Colorado is involved in a bankruptcy, merger, acquisition, reorganization or sale of assets, your information will not be sold or transferred as part of that transaction. Your information will be stored with DS-Connect at the NIH even if the ownership of the University of Colorado changes.
11. Notification of Changes
You should review the Privacy Policy whenever you use the Website in order to be aware of the ways that your information is used. The NIH, through the University of Colorado, reserves the right to change the Privacy Policy at any time, without prior notice.
Last Reviewed Date: 10/2024