EPIBIOS4RX Data Use Agreement
LONI | EPIBIOS4RX Data Use Agreement
I request access to data collected by the Epilepsy Bioinformatics Study for Antiepileptogenic Therapy (EpiBioS4Rx) for the purpose of scientific investigation, teaching or the planning of clinical research studies.
I agree to the following terms:
  1. I will receive access to de-identified data and will not attempt to establish the identity of, or attempt to contact any of the EpiBioS4Rx participants.
  2. I will not attempt to make direct contact with EpiBioS4Rx PIs or staff at sites concerning the specific results of individual subjects.
  3. I will not further disclose these data beyond the uses outlined in this agreement and my data use application. I understand that redistribution of individual participant-level data in any manner is prohibited. Reports and publication of summary (not participant-level) data are allowed.
  4. I will not utilize AI tools, especially (but not exclusively) those with public-facing interfaces that do not offer guarantees regarding the containment of data inputs for EpiBioS4Rx data, recognizing that the use of AI tools, including generative and analytical models, poses a potential risk of inadvertent data sharing due to the nature of how these tools process information and may lead to data being sent, saved, viewed, or used in unforeseen ways by parties not covered by the DUA, which is a direct violation of this agreement.
  5. I will not disclose any participant-level raw or derived datasets beyond the uses outlined in this agreement. Derived datasets containing participant-level data that I create and that I anticipate will benefit the scientific community, will be submitted to the EpiBioS4Rx study PIs (Dr. Paul Vespa and Dr. Arthur Toga). The study PIs will determine whether my data may be distributed through the EpiBioS4Rx-LONI and/or other NIA-designated data repository. I understand derived datasets should only be shared through the EpiBioS4Rx-LONI and/or other NIA-designated data repository.
  6. I will require anyone on my team (i.e. in my lab or company) who utilizes these data to comply with this Data Use Agreement. I understand that I am not allowed to distribute EpiBioS4Rx data outside of my team, only the EpiBioS4Rx study website operated by LONI-IDA can distribute data.
  7. I will accurately provide the requested information for persons who will use these data and the analyses that are planned using these data.
  8. I will respond promptly and accurately to annual requests to update information about my use of EpiBioS4Rx data.
  9. I will comply with any rules and regulations imposed by my institution and its institutional review board in requesting these data.
If I publish abstracts using data from EpiBioS4Rx, I agree to the following:
  1. I will cite EpiBioS4Rx as the source of data and the EpiBioS4Rx funding sources in the abstract as space allows.
  2. For abstracts, you are not required to cite EpiBioS4Rx in the authorship line.
If I publish manuscripts using data from EpiBioS4Rx, I agree to the following:
  1. On the by-line of the manuscript, after the named authors, I will include EpiBioS4Rx as an author by using the phrase "for the Epilepsy Bioinformatics Study for Antiepileptogenic Therapy*" with the asterisk referring to the following statement and list of names:
    • Data used in preparation of this article were obtained from the Epilepsy Bioinformatics Study for Antiepileptogenic Therapy (EpiBioS4Rx) database (ida.loni.usc.edu). As such, the investigators within the EpiBioS4Rx contributed to the design and implementation of EpiBioS4Rx and/or provided data but did not participate in analysis or writing of this report. A complete listing of EpiBioS4Rx investigators can be found at: https://epibios.ini.usc.edu/docs/acknowledgement_list_epibios4rx_publications.pdf .
  2. I will include language similar to the following in the Methods section of my manuscripts in order to accurately acknowledge data gathering by the EpiBioS4Rx personnel. Depending upon the length and focus of the article, it may be appropriate to include more or less than the example below. However, inclusion of some variation of the language shown below is mandatory.
    • Data used in the preparation of this article were obtained from the Epilepsy Bioinformatics Study for Antiepileptogenic Therapy (EpiBioS4Rx) database (ida.loni.usc.edu).
  3. I will acknowledge funding by the EpiBioS4Rx in the support acknowledgement section of the manuscript using language similar to the following:
    • Data collection and sharing for Epilepsy Bioinformatics Study for Antiepileptogenic Therapy (EpiBioS4Rx) is funded by National Institute on Aging (National Institutes of Health Grants U54 NS100064).
  4. I will ensure that Investigators within my team who utilize EpiBioS4Rx data use appropriate administrative, physical, and technical safeguards to prevent the use or disclosure of the data other than as provided for by this Agreement.
  5. 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.
IMPORTANT NOTE: EpiBioS4Rx maintains the right to modify terms of this agreement and may do so by posting notice of such modifications on this page. Any modification made is effective immediately upon posting the modification (unless otherwise stated). You should visit this page periodically to review the current use agreement terms.
I ACKNOWLEDGE AND AGREE THAT I AM RECEIVING THE CLINICAL DATA AND IMAGES IN AN "AS-IS" CONDITION WITHOUT ANY WARRANTIES, REPRESENTATIONS, OR GUARANTEES, EITHER EXPRESSED OR IMPLIED, OF ANY NATURE WHATSOEVER FROM OR ON BEHALF OF ACR, INCLUDING WITHOUT LIMITATION, THOSE OF FITNESS FOR A PARTICULAR PURPOSE AND USE.
I understand that failure to abide by these guidelines will result in termination of my privileges to access the EpiBioS4Rx data.
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