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User Terms for the Curation Studio

Welcome to the Curation Studio

Revision 1

24 February 2022

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Welcome to the Curation Studio, a service hosted and operated by Aridhia Informatics Ltd. (“Aridhia” or “Us”). If you access the Curation Studio, these terms of service and the Curation Studio Privacy Policy apply. The Curation Studio allows researchers from industry, healthcare and academia to bring data, metadata, code, domain expertise, analytics and apps and deliver their program objectives more effectively.

The purpose of the Curation Studio is to enable the preparation, anonymization, and harmonization of data from international clinical trials and biomedical and health research prior to its contribution to open access research databases, including the Alzheimer’s Disease Data Initiative’s (ADDI) AD Workbench. The ultimate goal of this is to enable discoveries that benefit all people, everywhere, by reducing the harm of Alzheimer’s Disease and other neurological disorders (the Purpose).

Curation Studio Data

The Curation Studio may contain non-anonymized data (the Curation Studio Data), which have been provided by third parties (each a Curator) for the Purpose.

Authorized users

You may only access the Curation Studio if you are authorized to access the Curation Studio and accept these Terms of Use.

General terms

By accessing the Curation Studio you agree to:

  1. Not copy, download or transfer any Curation Studio Data (other than data uploaded by you) to an external location, other than via outputs approved the Curator.
  2. Ensure that all statistical results and outputs do not breach any individual’s privacy and comply with any applicable data use agreements that may have been executed relating to the Curation Studio.
  3. We encourage communication of the results of research in an open access publication and require attribution, acknowledgement or accreditation to ADDI, the Curation Studio, and Curators and participants as they each may determine.
  4. Comply with all applicable laws, regulations, and rules in using the Curation Studio and Curation Studio Data, including protecting personal data (as defined by any applicable law including without limitation as defined by California Consumer Privacy Act, California Privacy Rights Act, U.S. federal law, and the General Data Protection Regulation) or any personal health information (as defined by any applicable laws including without limitation Health Insurance Portability and Accountability Act);
  5. Comply with your organization’s applicable policies and processes, including but not limited to any policies or processes relating to security, confidentiality, data protection, and ethical reviews.
  6. The Aridhia DRE privacy policy.
  7. Not attempt to bypass or override the built-in Curation Studio security controls including, but not limited to:
    • Inbound connectivity controls and restrictions
    • Outbound connectivity controls and restrictions
    • Workspace segregation and permissions
    • Virus scanning
    • Supported data ingestion methods
    • Supported data extract mechanisms including Airlock approved exports and transfers between Workspaces.
  8. Keep your allocated username and password secure, not disclose them to anyone else, and not allow anyone else to use them.
  9. Log out or lock your screen if you leave your workstation unattended for any length of time.
  10. Ensure that your use of the Curation Studio does not breach the Aridhia fair usage policy.

Data uploaded by you

If you upload data to the Curation Studio for your own use, you represent and warrant that: (a) you have all rights, title, and interest in and to such data required to upload and use such data in the Curation Studio; (b) to the best of your knowledge, such data does not and will not infringe, violate, or misappropriate any third-party rights; and (c) you have all full and proper consents, permissions, approvals, authorizations, and legal bases necessary to permit the disclosure, transfer (including cross-border transfer), storage, maintenance, and use of such data in the Curation Studio. Your use of the Curation Studio grants a license to your data to Aridhia and related service providers to the extent necessary to manage, host, and support the Curation Studio, including responding to your requests for service support.

Updates to these Terms of Use

Aridhia reserves the right to change these Terms of Use at any time by posting changes on-line. Your continued use of the Curation Studio after changes are posted constitutes acceptance of these Terms of Use as modified by the posted changes.

Termination

We may terminate your right to access the Curation Studio or any Curation Studio Data at any time for any reason, including in the event of a breach by you of any of these Terms of Use. Upon the termination of your access or upon Aridhia’s request, you will promptly return or destroy any Curation Studio Data in your possession. However, NIA may retain one copy if applicable to comply with US federal records retention requirements.

Indemnification

No indemnification for any loss, claim, damage, or liability is intended or provided by any party under this agreement. Each party shall be liable for any loss, claim, damage, or liability that said party incurs as a result of said party's activities under this agreement, except that the NIA, as an agency of the United States, assumes liability only to the extent as provided under the Federal Tort Claims Act (28 U.S.C. Chapter 171).

Representations; Disclaimer of Warranties

ARIDHIA AND ADDI MAKE NO WARRANTY, EXPRESS OR IMPLIED, INCLUDING, WITHOUT LIMITATION, ANY IMPLIED WARRANTIES OF MERCHANTABILITY OR OF FITNESS FOR A PARTICULAR PURPOSE WITH RESPECT TO ANY PATENT, TRADEMARK, NON-PUBLIC OR OTHER INFORMATION, TANGIBLE RESEARCH PROPERTY, OR ANY OTHER PROPERTY OR RIGHT LICENSED HEREUNDER AND HEREBY DISCLAIM THE SAME.

Publicity

ADDI may use NIA’s name, logo and other business information, including contact information, as provided by the NIA, in connection with the project provided that such use shall be accurate and shall not suggest or imply endorsement. Any other use of NIA’s name, logo, or other business information will require NIA’s consent. Nothing in this Agreement shall restrict the rights of Aridhia, ADDI, or NIA to disclose the existence of the relationship between any of the other Parties.