Privacy Policy

You must read the NBS Connect Privacy Policy (the “Privacy Policy”) and the Website (defined below) terms and conditions (the “Terms and Conditions”) prior to using any portion of the NBS Connect Website located at www.nbsconnect.org (the “Website”).  By using the Website, you agree to all the terms of the Privacy Policy. If you do not agree with the terms of this Privacy Policy, you may not use any portion of the Website.

The Website is developed and managed by the Southeast Regional Collaborative (referred to herein as “SERC”).  SERC respects your privacy and has written the Privacy Policy so that you are aware of the information SERC 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 SERC is not abiding by its posted Privacy Policy, please contact us via registered mail at:

NBS Connect Coordinator 
c/o NBS Connect 
Attn: Privacy Issues
Emory University Department of Human Genetics
2165 North Decatur Road
Decatur, Georgia 30033 

1.    General 

a.    NBS Connect has the highest regard for your privacy. We realize that our service can only work if we build trust with our user communities. For that reason, our first priority is making sure users are confident in the security of the data they share with us. The Privacy Policy outlines the type of information NBS Connect collects from the users of the Website and how it is shared with other parties. We reserve the right to modify the Privacy Policy at any time, and without prior notice, by posting amended terms and conditions on the 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 of the information you provide to NBS Connect will be maintained in a secure database, and any information that could identify you will not be shared without your express written consent.  

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 identification has been removed) gathered from this profile will be made available to registrants of the Website 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.  NBS Connect will perform the searches for specific questions within the registry and provide reports back to you and the medical research community.   Registrants can also perform searches of this de-identified data.

Any information you provide to third party genetic counselors or other professionals whom you have contacted through the Website will be subject to their policies with respect to privacy and nondisclosure of information.  We encourage you to familiarize yourself with those policies.

NBS Connect may employ independent contractors, vendors and suppliers (“Outside Contractors”) to provide specific services and products related to the Website or to the services provided on the Website, including but not limited to, performing general statistical analysis, maintaining an email suppression list as may be required by state and/or federal law, fraud screening, testing and implementation of special services to users, and developing applications for the Website and the services provided on the Website.  These Outside Contractors may have limited access to information collected on the Website, including personally identifiable information, in the course of providing such products or services.  

3.    Withdrawal of Information

a.    At any time, you reserve the right to withdraw your information from the Website registry database by contacting the NBS Connect Coordinator and your profile will be removed. 

4.    Protection of User Information

a.    All users are required to review and abide by the Website Terms and Conditions and the Privacy Policy.  NBS Connect will use commercially reasonable methods to protect the security of information and data submitted to the Website.  We employ best practices from our networking to our secure servers to protect your data from intrusion.  Users should keep in mind, however, that no internet transmission is ever 100% secure or error-free.  Where you use passwords, ID numbers, or other special access features on the Website, you should take special care to safeguard them.

6.    Ownership of Information

a.    All of the information you provide to NBS Connect in connection with the Website is owned by SERC.

7.    Third Party Notifications/Advertising

a.   NBS Connect reserves the right, in its discretion, to allow third parties to provide advertising or notices when you visit the Website.   These companies may use information you provided on this Website (excluding your name, address, email address or telephone number) and other sites in order to provide advertisements or relevant notifications on the Website and other sites about goods and services that may be of interest to you.   NBS Connect will encourage such companies to follow best practices with respect to the collection and use of non-personally identifiable information and personally identifiable information that was not obtained from your participation on the Website; however, NBS Connect assumes no responsibility for the activities of the third parties with respect to the collection and use of such information.

8.    Cookies

a.    When you visit the Website, we may send one or more cookies to your computer that will uniquely identify your browser.  In addition, in the course of serving advertisements to this site, our third-party advertisers may place or recognize a unique "cookie" on your browser.  A cookie is a piece of data stored on the user's hard drive containing information about the user.  Cookies may be used by NBS Connect to enable it to track and target the interests of users to enhance their experience on the Website.  Usage of a cookie is in no way linked to any personally identifiable information while on the Website.  If a user rejects the cookie, they may still use the Site.  Some of NBS Connect’s business partners, advertisers and sponsors use cookies, but NBS Connect has no access to or control over these cookies.

9.    Log Files; Web Beacons

a.    NBS Connect may use log file information sent by your web browser (which may include information such as your web request, Internet Protocol (“IP”) address, browser type, browser language, referring/exit pages and URLs, platform type, and other information) to analyze trends, administer the Site, track the movement of users, and gather broad demographic information for aggregate use. IP addresses are not linked to personally identifiable information.

NBS Connect may also employ “web beacons” (also known as clear gifs) to track online usage patterns of users.  This information is not linked to personally-identifiable information.  Web beacons may also be employed for tracking and receipt purposes in connection with web-based emails we send to users.

10.    Website Links

a.    The Website may contain links to other Web sites.  The Privacy Policy applies solely to information collected on or submitted to the Website.  NBS Connect is not responsible for the privacy practices of other sites linked to the Website or third party advertisements served on the Website.  NBS Connect encourages users to read the privacy policies of websites and third party advertisers when they connect to them through the Website.

11.    Communications From NBS Connect

a.    From time to time, NBS Connect or other related entities will notify users of updates and other valuable information about NBS Connect, the Website and related clinical and research information.  By using the Website, or registering or subscribing for services provided on or through the Website, users consent to being contacted by NBS Connect and related entities, and to receiving such updates and information.
NBS Connect encourages related entities, including its business partners, to follow best practices with respect to email communications, security and privacy.  However, NBS Connect cannot control, and assumes no responsibility for, any contact of users by related entities, including its business partners.

In the case of emails coming directly from NBS Connect, such emails will clearly be from NBS Connect and will include instructions on how to unsubscribe from future emails.

12.    Required Disclosures

a.    You understand and agree that NBS Connect may disclose information provided if in its good faith belief such disclosure is required by applicable law.

13.    Contact Us; Member Accounts

a.    If a user elects to contact NBS Connect through contact information provided on the Website, or registers for an account, the user may be asked for any of the following: name, password, e-mail address, e-mail subject and a message containing their inquiry (in the case of a “contact us” inquiry), and certain profile and account information (in the case of a member account registration).  NBS 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 owned by NBS Connect and subject to the terms detailed in the Privacy Policy.  

14.    Children Under The Age Of Thirteen (13)

a.    NBS Connect is unable to prevent children under the age of thirteen (13) from visiting the Website; however, no part of our 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.  In order to comply with the Children's Online Privacy Protection Act, NBS Connect will not knowingly collect personally identifiable information from children under the age of thirteen (13).  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 thirteen (13) years of age and that you agree to comply with the Privacy Policy.  If, at any time, NBS Connect learns that personally identifiable information has been collected from persons under the age of thirteen (13) without verified parental consent, NBS Connect will take the appropriate steps to delete such information.

15.    Notification Of Changes

a.    You should review the Privacy Policy whenever you use the Website in order to be aware of the ways that your information is used.  NBS Connect reserves the right to change the Privacy Policy at any time, without prior notice.