Disclaimer of Endorsement

Last Update Date: 6/21/18

The Kids First Data Resource Center (DRC) comprises partnered institutions supported by the NIH Common Fund under Award Number U2CHL138346 as part of the Common Fund’s Gabriella Miller Kids First Pediatric Research Program (Kids First). All content, terms and conditions and policies associated with the Kids First DRC Portal and Website (the “Services”) are produced by the Kids First Data Resource Center. The views and opinions of authors expressed on the Kids First DRC Website, Portal, and/or other Services do not necessarily state or reflect those of the the National Institutes of Health (NIH) or the U.S. government. Furthermore, the NIH does not endorse or promote any DRC entity or any of its products or services nor guarantees the products, services, or information provided by the DRC.

Terms & Conditions

Last Update Date: 5/30/18

As a user of the Kids First DRC Website, Portal and/or other Services you agree that you are 13 years of age or older and furthermore agree to the Terms and Conditions of Services defined herein and where applicable the terms defined by the NIH Genomic Data User Code of Conduct. These terms include, but are not limited to:

  1. You will request controlled-access datasets solely in connection with the research project described in an approved Data Access Request for each dataset;
  2. You will not distribute controlled-access datasets to any entity or individual beyond those specified in an approved Data Access Request;
  3. You will adhere to computer security practices in compliance with NIH Security Best Practices for Controlled-Access Data such that only authorized individuals possess access to data files;
  4. You acknowledge Intellectual Property Policies should they exist as specified in a dataset’s associated Data Use Certification; and,
  5. You will report any inadvertent data release in accordance with the terms in the Data Use Certification, breach of data security, or other data management incidents contrary to the terms of data access.

Kids First DRC terms and conditions may be changed at any time via a public posting of revisions to the Kids First DRC Website, Portal and/or Services. As a user, you agree to review the Terms & Conditions and Privacy Policies each time you use the Kids First DRC Website, Portal and/or Services so that you are aware of any modifications made to these policies. By accessing or using the Kids First DRC Website, Portal and/or Services, you agree with and to be bound by all of the terms and conditions and policies as posted on the Kids First DRC Website, Portal and/or Services at the time of your access or use, including the Privacy Policies then in effect.

For documents and/or data available from DRC Services, the Kids First DRC does not warrant or assume any legal liability or responsibility for the accuracy, completeness, or usefulness of any information, apparatus, product, or process. No specific medical advice is provided by any Services, and Kids First urges users of Services to consult with a qualified physician for diagnosis and for answers to personal questions.

If you have any questions about these terms, conditions or the practices of this site or any of the other Kids First DRC Services, please contact us at support@kidsfirstdrc.org.

Privacy Policy

Last Update Date: 5/30/18

The Kids First Data Resource Center (“DRC”) has created these policies to demonstrate its commitment to privacy and transparency of practices. It discloses our information-gathering and dissemination practices for the Kids First Website and Data Resource Portal (the “Services”). Your visit to the Services is private and secure. When you visit the Services, the DRC does not collect any personally identifiable information (PII) about you, unless you choose to explicitly provide it. If you send the DRC email, respond to a survey, provide online feedback, register for the Kids First Portal, or otherwise subscribe to one of the DRC’s online publications or email newsletters, then naturally the DRC will have your name and email address. The DRC will use such information only for replying to your message, forwarding the requested material, and maintaining your Services profile. 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.

Data Access

Only members of the Data Resource Center staff, its approved contractors, and its approved vendors have access to the data collected by the Services. Personal data is only accessed in order to provide support to the Services and is in no way sold to third parties.

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.

Online Comment Forms

Please note that the DRC 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 DRC cannot and does not provide any assurances that the contents of your e-mail will not become known or accessible to third parties.

Your 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.

Children's Privacy

The DRC 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 personally identifiable information is ever collected from any person known to be under the age of 13.

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 DRC. 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 DRC 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 DRC Services currently integrate with:

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 Kids First Data Resource Center, you may request unsubscription by emailing support@kidsfirstdrc.org.

If you would like to stop receiving emails from the NIH Kids First Listserv, you may go here.

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

Kids First Data Resource Center

The Children’s Hospital of Philadelphia,

2716 South Street

12th Floor, #12302

Philadelphia, PA 19104.

Passwords and Tokens

You are responsible for taking all reasonable steps to ensure that no unauthorized person shall have access to your DRC 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 DRC account and password; (3) promptly inform us of any need to deactivate a password or token. You grant to the DRC 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 DRC cannot and does not assume any responsibility or liability for any information you submit, including to online Community, or your or third parties’ use or misuse of information transmitted or received using the DRC tools and services, including Online Community.

Changes to Our Privacy and Security Policies

Just as with the other terms and conditions associated with the Services, the DRC may change the terms and conditions of its Privacy Policies at any time by posting revisions on the Service. You agree to review the 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 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 Policies then in effect.

Disclaimer of Liability

For documents and/or data available from or provided by any DRC Services, the Kids First DRC 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 no specific medical advice is intended or provided by any of the DRC Services, and 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@kidsfirstdrc.org.

Kids First Data Resource Center

The Children’s Hospital of Philadelphia,

2716 South Street

12th Floor, #12302

Philadelphia, PA 19104.