Terms of Access Agreement

I request access to data housed at the biorepositories supported by the Foundation for Peripheral Neuropathy at Indiana University, the Peripheral Neuropathy Research Registry (PNRR), for the purpose of scientific investigation, teaching, or the planning of clinical research studies and agree to the following terms:

Section I: Access, Use, and Safeguards
  1. I understand that any data I receive pursuant to this agreement is for the purpose(s) of determining study feasibility, budget, methods, or protocol development.

  2. I understand the data I receive pursuant to this agreement are de-identified in accordance with the HIPAA Privacy Rule.

  3. I understand I will be required to complete a Material Transfer Agreement (MTA) to receive samples and a Data Use Agreement (DUA) to receive sample unblinded data for the purpose of analysis or publication.

  4. I will not attempt to establish the identity of, or attempt to contact any of the subjects with data in PNRR.

  5. I will not attempt to identify any specific study sites, unless PNRR has approved such identification as part of my project's protocol.

  6. I understand that distributing these data to a third party is prohibited, and therefore I will not distribute these data beyond the uses outlined in this agreement. A third party is defined as anyone who is not a collaborator or co-author on the analyses defined in my proposal.

  7. I will require anyone on my team who uses the data, or anyone with whom I share these data, to comply with this Terms of Access Agreement.

  8. I will accurately provide the requested information about persons who will use the data and analyses that are planned using these data.

  9. I will comply with any rules and regulations imposed by my institution and its institutional review board in requesting and using these data.

  10. I understand the Data delivered pursuant to this Agreement is understood to be provided "AS IS." DATA PROVIDER MAKES NO REPRESENTATIONS AND EXTENDS NO WARRANTIES OF ANY KIND, EITHER EXPRESSED OR IMPLIED, PERTAINING TO THE DATA.

  11. I understand that any data I download may change as new quality assurance measures are implemented and data records are updated.

  12. I will ensure that Investigators who utilize data obtained from PNRR use appropriate administrative, physical, and technical safeguards to prevent use or disclosure of the data other than as provided for by this Agreement.

  13. I will report any use or disclosure of the data not provided for by this Agreement of which I become aware within 15 days of becoming aware of such use or disclosure.

Section II: Project Updates
  1. I will respond promptly and accurately to PNRR's requests for updates on the status of my project for which I requested access to the PNRR catalogs.

  2. I will review the data documentation provided by PNRR and consult with PNRR research coordinators in order to ensure the accurate use and description of study data in my grant application, budget, proposed analysis methods, or protocol development.

  3. I understand that my access to this data will expire in 1 year, and if I wish to retain access for an additional year, I will be required to provide an update on the project or projects for which I am using the PNRR catalogs.

  4. I understand that failure to abide by the requirements found in this Agreement will result in termination of my privileges to access PNRR data.