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 physician-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. Neither 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.
PRIVACY POLICY
The Network provides the following privacy policy (the
“Privacy Policy”) in order to demonstrate its firm commitment to privacy. The Network may need to change this Privacy Policy from time
to time in order to address new issues and to reflect changes on our Site. Please refer back to this Privacy Policy
regularly because your use of the Site signifies that you agree to be bound by
the terms and conditions of this Privacy Policy, as amended from time to time.
a. 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.
b. 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.
c. Cookie
Technology. The Network collects non-personal identification information
through the use of “cookie” technology and/or Internet Protocol (“IP”) address
tracking. Cookies are small text files a website can use to recognize repeat users and facilitate the user’s
ongoing access to and use of the site. Non-personal identification information might include the browser used
by the user, the type of computer, the operating systems, the Internet service
providers and other similar information. The Site may also
automatically gather information about the areas the user visits on the Site
and about the links the user may select from within the Site to other
sites. Most browsers are set to accept cookies. You can set yours
to refuse cookies, or to alert you when cookies are being sent.
d. 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.
e. Links to other sites. Users will find content on the Site that
enables linking to third party sites. These third party sites may have their own privacy policies or no policy
at all. The Network Privacy Policy does not apply to such other
sites. The Network has no control over and is not responsible for
the content displayed on such sites, nor over the measures, if any, that are
taken by such sites to protect the privacy of user information. Users should check the privacy policy of
any third party site before providing personally identifiable information.
f. Security
of Information. The Network is committed to keeping user information secure, and uses industry
standard technology in an attempt to achieve that goal.
g. 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.
h. 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.
i. 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.
j. Contact Information.
The Network welcomes your comments and questions. All comments and questions regarding
this Privacy Policy should be directed to the Project Manager by email at [email protected].
LINKS TO OTHER SITES
The 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 access linked third-party websites, you do so at your own risk. Your
use of third-party websites is subject to the terms of use for such sites.
COMPLAINT PROCEDURES
Any suspected violations of these Terms and Conditions or misuse of the
Site should be immediately reported to [email protected].
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.
AGREEMENT
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.
YOU 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
