NEWBORN SCREENING TRANSLATIONAL RESEARCH NETWORK (NBSTRN)
Longitudinal Pediatric Data Resource (LPDR)
AGREEMENT FOR TERMS AND CONDITIONS OF USE OF NBSTRN.org
Welcome to the website of the NEWBORN SCREENING TRANSLATIONAL RESEARCH NETWORK, NBSTRN.org (the “Site”). The Site is produced by and for the NBSTRN by the National Coordinating Center, developed by the American College of Medical Genetics and Genomics (the “ACMG”) (hereinafter, the NBSTRN, the National Coordinating Center, and the ACMG, when referred to collectively, shall be referred to as the “Network”).
The Site houses the Virtual Repository of Dried Blood Spots, and the Longitudinal Pediatric Data Resource. Please take a few minutes to review the following statements containing important legal information, privacy policies and other terms and conditions of use of the Site.
Thank you for your cooperation.
SUMMARY OF IMPORTANT LEGAL INFORMATION
The Longitudinal Pediatric Data Resource (LPDR), is a combined system of standardized data elements, electronic data capture, centralized data management, unified data representation, and case reporting within a FISMA- compliant architecture.
All use of the NBSTRN.org Site is subject to the Terms and Conditions set forth in the remainder of this agreement.
By entering and using the Site, you acknowledge that you have read and understood such Terms and Conditions and that you agree to abide by them.
The Site is designed and intended for informational and scientific purposes only.
The Network does not endorse, guarantee, warrant, or recommend any information, products or services discussed on the Site or linked from the Site.
No Medical Advice or Physician-Patient
Relationship. The content of the site is
provided for informational and scientific purposes only and is not, and should
not be considered to be, medical advice. This information is not intended to
create, and receipt of it does not constitute a consultation or create a
patient relationship. The content is not for use in the diagnosis or treatment of any individual condition or as a substitute for a consultation with a licensed medical professional. The content should not be considered complete; is not exhaustive; and does not cover all diseases, ailments, physical conditions, or their diagnosis intended or treatment.
No Legal Advice or Attorney-Client Relationship. The content of the site is not intended as, and should not be construed as, legal advice. Adherence to any information or suggestions contained in this document is strictly voluntary and does not ensure compliance with federal or state law. For specific legal advice regarding the law applicable to your situation, seek the advice of legal counsel.
Information Presented by the Network.The information provided by the Network on the Site or provided to users through the Site, including, but not limited to, information from and about state public health programs, state rules and regulations, searchable listing of DBS available from participating states, and data elements collected by states in connection with the DBS are provided for informational and scientific purposes only. Further, although the Network endeavors to ensure the accuracy and reliability of information provided on or through the Site, it does not guarantee the accuracy, completeness, efficacy or timeliness of such information, and therefore, makes no representation or warranty regarding the same. The Network does not endorse, guarantee, warrant, or recommend any information, products or services discussed on the Site or linked from the Site. Reliance on any information, products or services appearing on the Site that is provided by the Network or Network employees is solely at your own risk.
Availability and Quality of Dried Blot Spots. The Network does not guarantee that DBS will be available at the time of your request and therefore, makes no representation or warranty regarding the same. Further, the Network does not represent, guarantee or warrant the validity or quality of the DBS or the accuracy or completeness of the associated data elements made available on or through the Site. Reliance on any information, products or services appearing on the Site that is provided by the Network or Network employees is solely at your own risk.
Liability of the Network and its Licensors.The Site and information provided on the Site is provided on an “as is” and “as available” basis, with all faults.
the Network nor any person associated with the Network makes any warranty or
representation with respect to the quality, accuracy, or availability of the
Site. Specifically, but without limiting the foregoing, neither the Network nor
anyone associated with the Network warrants or represents that the Site or the
information provided on the Site will be accurate, reliable, error-free,
uninterrupted; that defects will be corrected; that the Site or the servers
that make them available are free from viruses or other harmful components; or
that the Site will otherwise meet your needs or expectations. The Network
disclaims all warranties of any kind, express or implied, including any
warranties of merchantability, fitness for a particular purpose or
non-infringement. In no event
will the Network or its contractors be liable for any damages of any kind, under any legal theory, arising out of or in connection with your use of, or inability to use, the Site, including any direct, indirect, incidental, special, consequential or punitive damages, including, but not limited to, lost profits or damages resulting from delay, interruption in service, viruses, deletion of files or electronic communications, or errors, omissions, or other inaccuracies in the Site or the content transmitted on the Site or personal injury, whether or not there is negligence by the Network and whether or not the Network has been advised of the possibility of any such damages.
User Obligations. You agree to comply in all respects with these Terms and Conditions as they may be amended, updated or revised from time to time. Your failure to comply with the provisions of copyright and trademark restrictions may expose you to civil and/or criminal liability.
Copyright and Trademark Notices. The content of material provided by the Network on the Site is copyrighted by the Network or used by the Network under license or other legal authority. The Network and its licensors retain all copyrights and other proprietary rights in or relating to any content, including any software, provided on the Site. All rights are reserved and such content may not be reproduced, downloaded, modified, published, displayed, disseminated, or transferred, in any form or by any means, except with the prior written agreement of the Network or as indicated below. You may download and print a small number of copies of the content for scientific or educational uses. You may not sell, transfer, reproduce, transmit, distribute, perform or display such content for any commercial purpose without the prior express written consent of the Network.
- Collection of Personal Information. The Network may ask for information about our users at the point of registration. Such information may include name, age, education level, gender, occupation, e-mail address, zip code and areas of interest. This information tells us about the types of people (e.g., investigators vs. state health department officials) who use the Site, allows us to verify a user’s identity and genuine research interest, and helps us tailor the Site to our audience.
- Use of Personally Identifiable Information. The Network will not sell or otherwise transfer or disclose personally identifiable information to third parties without the user’s prior consent except as may be required by federal, state or
local law, or by exigent circumstances. That means that the Network will not disclose your name, e-mail address, street address or phone number without your consent. We may use your personally identifiable information to compile and display content and information that we think you might be interested in. The Network also may use your profile information on an aggregate basis — without personal identifiers — to develop and display new features and content for the Site, and to provide others with aggregate information about our users and the usage patterns of the Site. The Network also may perform statistical analyses of user behavior (on an aggregate basis) in order to measure interest in and use of the various areas of the Site.
- Password Protected Areas. The Network does not warrant or represent that the information you submit to the Site will be protected against loss, misuse, or alteration by third parties. You are responsible for taking all steps to ensure that no other person has access to your password or account. It is your sole responsibility to (1) control the dissemination and use of your password; (2) authorize, monitor, and control access to and use of your password; and (3) promptly inform the Network of any need to deactivate your user name or password. You permit the Network and all other persons or entities involved in the operation of the website to transmit, monitor, retrieve, store and use your information in connection with the operation of the nbstrn.org site. The Network does not and cannot assume any responsibility or liability for any information submitted by you to the Site or for your or third parties’ use or misuse of information transmitted or received through the Site.
- Security of Information. The Network is committed to keeping user information secure, and uses industry standard technology in an attempt to achieve that goal.
- Release of Information to Comply with Legal Requirements or Government Request The Network reserves the right at all times to disclose any information uploaded to or appearing on the Site to the extent necessary to comply with any applicable law, regulation, legal process, subpoena or governmental request.
- Removal of Information and Termination of Usage. The Network reserves the right, but does not assume any responsibility, to (1) remove from the Site any material posted by you which the Network, in its sole discretion, deems inconsistent with these Terms and Conditions; and/or (2) terminate your access to all or part of the Site. However, the Network can neither review all material prior to transmission on the website nor ensure prompt action with respect to objectionable material after it is transmitted on the Site. Accordingly, the Network assumes no liability for any action or inaction regarding transmissions, communications, or other content that is provided by third parties. The Network reserves the right to take any action it deems necessary to protect the personal safety of users of the Site and the public, however, the Network has no liability or responsibility to anyone for performance or nonperformance of the activities in this paragraph.
- Parental Permission. The Network does not intend that children will use the Site. Some of the information available on the Site may not be appropriate for children. USERS UNDER 18 YEARS OF AGE MUST OBTAIN PARENTAL PERMISSION TO USE THE SITE. Adults should not assist unauthorized children to access the Site. The Network will not knowingly collect, use or disclose personally identifiable information about visitors under 18 years of age.
LINKS TO OTHER SITES
Site contains links to third party websites. These links are provided solely as a convenience to users and not as a
guarantee, warrantee, endorsement or recommendation by the Network of the
content on such third-party websites or as an indication of any affiliation,
sponsorship or endorsement of such third party websites. The Network is not
responsible for the content of linked third- party sites and does not make any
representations regarding the privacy practices of, or the content or accuracy
of materials on, such third-party websites. Furthermore, The Network is not
responsible for webcasting or any other form of transmission received from any
linked website. If you decide to
Any suspected violations of these Terms and Conditions or misuse of the Site should be immediately reported to firstname.lastname@example.org.
MISCELLANEOUS CONDITIONS OF USE
Resolution and Disputes. These Terms and Conditions shall be governed in all respects by and construed in accordance with the laws of the State of Maryland, without regard to its conflicts of law principles. These Terms and Conditions, as they may be amended from time to time, completely and exclusively state the agreement between you and the Network with respect to the Site, and no other terms that may have been communicated to you orally or in any other manner shall have any force or effect. Any cause of action you may have that arises out of or relates to the Site must be commenced within one (1) year after the claim or cause of action arises or such claim or cause of action is barred. Exclusive jurisdiction over any cause of action arising out of or relating to the Site shall be in the state or federal courts located in the State of Maryland. You agree and submit to the jurisdiction of such courts.
If any part of the Terms and Conditions are unenforceable, the unenforceable part shall be construed to reflect, as nearly as possible, the original intentions of the parties. The other provisions of the Terms and Conditions shall remain in full force and effect. The Network’s failure to insist upon or enforce strict performance of any provision of the Terms and Conditions shall not constitute a waiver of the provision. Neither a course of dealing or conduct between you and the Network nor any trade practices shall be deemed to modify the Terms and Conditions.
BY ENTERING AND USING THE NBSTRN.ORG SITE, YOU ACKNOWLEDGE AND AGREE THAT YOU HAVE READ AND UNDERSTAND THESE TERMS AND CONDITIONS OF USE FOR THE NBSTRN.ORG SITE, THAT THE PROVISIONS, DISCLOSURES AND DISCLAIMERS SET FORTH ABOVE ARE FAIR AND REASONABLE, AND THAT YOUR AGREEMENT TO FOLLOW AND BE BOUND BY THEM IS VOLUNTARY AND IS NOT THE RESULT OF FRAUD, DURESS OR UNDUE INFLUENCE EXERCISED UPON YOU BY ANY PERSON OR ENTITY.
ALSO AGREE TO INDEMNIFY AND HOLD HARMLESS THE NETWORK; NETWORK MEMBERS AND
THEIR OFFICERS, DIRECTORS, MEMBERS, AGENTS, AND AFFILIATES; THIRD-PARTY
INFORMATION PROVIDERS; LICENSORS; AND OTHERS INVOLVED IN THE DELIVERY OF THE
WEBSITE OR THE DELIVERY OF INFORMATION, PRODUCTS OR SERVICES OVER THE WEBSITE,
FROM AND AGAINST ANY AND ALL LIABILITIES, EXPENSES,
DAMAGES, AND COSTS, INCLUDING REASONABLE ATTORNEY’S FEES, FROM ANY CLAIM, COMPLAINT OR DAMAGE ARISING OUT OF OR IN CONNECTION WITH YOUR USE OF THE SITE, INCLUDING BUT NOT LIMITED TO ANY VIOLATION BY YOU OF THESE TERMS AND CONDITIONS.
LAST REVISED DATE: September 25, 2013