Data Use Agreement

Below you will find a copy of our Data Use Agreement.  Please contact transformdbs@partners.org for more information or register for an account to gain access to a richer search capability and the ability to download data.

DATA USE AGREEMENT

  1. The party receiving access to the Data (as defined below) is _____________________ (“Recipient”), a staff member or employee of______________________________________________ (“Institution”), with a principal place of business at _________________________.  The party holding the Data is The General Hospital Corporation d/b/a Massachusetts General Hospital (“Holder”), with a principal place of business at 55 Fruit St, Boston, MA 02114.

  2. Holder has been awarded Defense Advanced Research Projects Agency (“DARPA”) Cooperative Agreement number W911NF-14-2-0045 for a Project entitled “Transformative Restoration of Affective Networks by Systematic Function-Oriented, Real-Time Modeling and Deep Brain Stimulation (“TRANSFORM-DBS”).

  3. For purposes of this Data Use Agreement (“Agreement”), the “Data” refers to MRI, MEG/EEG, and Electrophysiology data and metadata generated in the TRANSFORM-DBS project and posted to the TRANFORM-DBS website. All Data is de-identified within the meaning of the United States Health Insurance Portability and Accountability Act (“HIPAA”) privacy regulations.

  4. Holder wishes to provide the Data and Recipient requests access to the Data for the purposes of scientific research and education.

  5. Recipient agrees to not distribute Data to other individuals inside Recipient’s institution unless such parties have agreed in writing to the terms and conditions contained herein prior to transfer. Recipient shall not transfer the Data outside of Recipient’s Institution. Investigators at other institutions must apply directly to the TRANSFORM-DBS website to obtain Data.

  6. By accepting this Agreement, Recipient warrants that all Institution-required approvals are in place for the use of the Data. Such approvals may include, as applicable, Institutional Review Board (“IRB”) approval and approval of the terms and conditions of this Agreement.

  7. In consideration of Holder making available the Data to Recipient, Recipient agrees as follows:
    1. To use and disclose the Data only as permitted by this Agreement and the IRB-approval, as applicable, or as required by law.

    2. To use appropriate safeguards to prevent use or disclosure of the Data other than as provided for by this Agreement and the Purpose.

    3. To, throughout the period of this Agreement, warrant compliance with all applicable Federal, State, and local laws and regulations.

    4. To not to attempt to re-identify the Data. If such re-identification occurs, Recipient shall immediately inform Holder and destroy all copies of the Data. Any attempt to re-identify Data will result in the Recipient being barred from further access to Data on the TRANSFORM-DBS website, updates to Data, or future TRANFORM-DBS Data.

  8. Recipient agrees to report to Holder and to Federal and state agencies, as appropriate, any use or disclosure of the Data not provided for by this Agreement of which it becomes aware, including, without limitation, any unauthorized disclosure to subcontractors, within five (5) days of its awareness.

  9. Data is made available to investigators as quickly as possible. However, data analysis for TRANSFORM-DBS is expected to evolve as processing and analysis methods develop over time. Therefore, Recipient acknowledges that Data may be preliminary, is of an experimental nature and is being provided AS IS, WITHOUT WARRANTY OR REPRESENTATIONS (including as to merchantability, fitness for a particular purpose, accuracy, efficacy, completeness, capabilities or safety, or non-infringement on third party proprietary rights or any other warranties or representations whether express or implied); all warranties and representations with respect to the Data are hereby excluded to the greatest extent permissible by law.  Neither Holder nor its employees, servants or agents shall have any liability whether in contract, tort, and statute or otherwise in connection with Recipient’s use of the Data.  Recipient uses the Data at Recipient’s own risk.
  10. Recipient agrees to abide by a 24 month publishing embargo that begins at the time the Data is first posted on the TRANSFORM-DBS website. A publishing embargo means that the Data will be made available to the Recipient for processing and/or analysis, but the Recipient agrees not to publish the results of these activities within a 24 month window after the Data is first made available. Exceptions to this rule may be granted on a case-by-case basis by the Principal Investigators of the TRANSFORM-DBS project.

  11. For use of Data that results in a publication or other public presentation, Recipient is required to acknowledge DARPA as well as the TRANSFORM-DBS project in the Acknowledgments section. Recipient must include statements substantially similar to the following: (1) “Data collection and sharing for this project was funded by the Defense Advanced Research Projects Agency (DARPA) Cooperative Agreement number W911NF-14-2-0045.”; and (2) "Data used in preparation of this article were obtained from the TRANSFORM-DBS database (http://transformdbs.partners.org).  As such, the investigators within TRANSFORM-DBS contributed to the design and implementation of TRANSFORM-DBS and/or provided data but did not participate in analysis or writing of this report."

  12. If the Recipient opts-in to the Data Modification Notification program, Recipient agrees to be contacted by representatives of the TRANSFORM-DBS project regarding modifications of, or notifications regarding, TRANSFORM-DBS data.

  13. The determination of the rights of ownership and disposition of inventions resulting from the performance of the research under this Agreement shall be made in accordance with the US standard Rules of inventorship and subject to the provisions of 37 CFR 401, et. seq.

  14. Recipient understands that failure to abide by these terms and conditions will result in termination of its privileges to access TRANSFORM-DBS Data.