Form 1 NCS Vanguard Data User Agreement Form

OMB# xxxx-xxxx
exp. date xx/xx/xxxx

A.1 NCS Data User Agreement

National Children’s Study Vanguard Data User Agreement
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Requesting Investigator Information
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*Institution:
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NATIONAL CHILDREN’S STUDY VANGUARD DATA USER AGREEMENT
Terms & Conditions
The data owned by the Eunice Kennedy Shriver National Institute of Child Health and
Human Development (NICHD) is offered as an information and data resource for scientific
research.

Public reporting burden for this collection of information is estimated to average 10 minutes per response, including
the time for reviewing instructions, searching existing data sources, gathering and maintaining the data needed,
and completing and reviewing the collection of information. An agency may not conduct or sponsor, and a
person is not required to respond to, a collection of information unless it displays a currently valid OMB
control number. Send comments regarding this burden estimate or any other aspect of this collection of
information, including suggestions for reducing this burden, to: NIH, Project Clearance Branch, 6705 Rockledge
Drive, MSC 7974, Bethesda, MD 20892-7974, ATTN: PRA (xxxx-xxxx). Do not return the completed form to this
address.
Privacy Act Notification: Information collected as part of the data use agreement, data request forms, and
distribution agreement may be made public in part or in whole for tracking and reporting purposes. This Privacy Act
Notification is provided pursuant to Public Law 93-579, Privacy Act of 1974, 5 U.S.C. Section 552a. Authority for
the collection of the information requested below from the recipient comes from the authorities regarding the
establishment of the National Institutes of Health, its general authority to conduct and fund research and to
provide training assistance, and its general authority to maintain records in connection with these and its other
functions (42 U.S.C. 203, 241, 289l-1 and 44 U.S.C. 3101), and Section 301 and 493 of the Public Health Service
Act. These records will be maintained in accordance with the Privacy Act System of Record Notice 09-25-0200
(https://oma.od.nih.gov/forms/Privacy%20Documents/PAfiles/0200.htm) covering “Clinical, Basic and Populationbased Research Studies of the National Institutes of Health (NIH), HHS/NIH/OD.” The primary uses of this
information are to document, track, and monitor and evaluate the use of the NCS Archive, as well as to notify
interested recipients of updates, corrections or other changes to the NCS data. The Federal Privacy Act protects the
confidentiality of some NIH records. The NIH and any users that are provided access to the NCS Archive will have
access to the information collected by the NIH from the Recipient, as part of the data use agreement, data request
forms, and distribution agreement for the purposes described above. In addition, the Act allows the release of
some information without the Recipient’s permission; for example, if it is requested by members of Congress or
other authorized individuals. The information requested is voluntary, but necessary for obtaining access to data
and samples in the NCS Archive.

Users of National Children’s Study (NCS) Vanguard data agree to comply with all terms
and conditions of the NICHD User Agreement during the registration process.
By accepting the NICHD User Agreement, you agree:
1. to use NCS resources for the purposes of archiving and accessing data obtained from
scientific research with the intent of data sharing and reuse, and to notify the NCS
Administrator of any breach in use
2. to use NCS data for scientific research in an institution with an approved assurance
from the Department of Health and Human Services Office for Human Research
Protections, and to not use the data for commercial purposes (or sell the data
obtained from NICHD)
3. to preserve and protect the confidentiality of, and not attempt to identify, any
individuals or households in the data
4. that archived data are provided without warranty or liability of any kind
5. to notify the NCS Administrator of any errors discovered in the archived data
6. to establish safeguards to prevent unauthorized viewing or release of NCS
information or data
7. to comply with any charges that may apply for various services offered by NCS
8. to ensure that the means of access to NCS (such as passwords) are kept secure and
not disclosed to anyone else
9. that personal data submitted by you are accurate to the best of your knowledge and
kept up to date by you
10. that personal data provided by you may be used for administrative management of
NCS and for reporting purposes with the goal of improving services offered by NCS
11. that any breach of the User Agreement could lead to termination of your access to
the services
12. [Privacy Act Notification] that information collected from the Recipient, as part of the
data use agreement or data request forms, may be made public in part or in whole for
tracking and reporting purposes. This Privacy Act Notification is provided pursuant to
Public Law 93-579, Privacy Act of 1974, 5 U.S.C. Section 552a. Authority for the
collection of the information requested below from the recipient comes from the
authorities regarding the establishment of the National Institutes of Health, its general

authority to conduct and fund research and to provide training assistance, and its general
authority to maintain records in connection with these and its other functions (42 U.S.C.
203, 241, 289l-1 and 44 U.S.C. 3101), and Section 301 and 493 of the Public Health
Service Act. These records will be maintained in accordance with the Privacy Act System
of Record Notice 09-25-0200
(https://oma.od.nih.gov/forms/Privacy%20Documents/PAfiles/0200.htm) covering
“Clinical, Basic and Population-based Research Studies of the National Institutes of
Health (NIH), HHS/NIH/OD.” The primary uses of this information are to document,
track, and monitor and evaluate the use of the NCS Archive, as well as to notify
interested recipients of updates, corrections or other changes to the NCS data.

The Federal Privacy Act protects the confidentiality of some NIH records. The NIH and
any users that are provided access to the NCS Archive will have access to the information
collected by the NIH from the Recipient, as part of the data use agreement or data request
forms for the purposes described above. In addition, the Act allows the release of some
information without the Recipient’s permission; for example, if it is requested by
members of Congress or other authorized individuals. The information collection
requested is voluntary, but necessary for obtaining access to data and samples in the NCS
Archive.
13. to complete NCS Data User Training.

Check the box if you agree to the terms and conditions.

I Agree