LONI | 4RTNI Data Use Agreement

4RTNI Data Use Agreement

I request access to data collected by the 4-Repeat Tauopathy Neuroimaging Initiative (4RTNI) and Neuroimaging in Frontotemporal Lobar Degeneration Neuroimaging Initiative (FLTDNI) for the purpose of scientific investigation, teaching, or the planning of clinical research studies and I agree to the following terms:
  1. I will receive access only to de-identified data and will not attempt to establish the identity of any 4RTNI or FTLDNI subjects.
  2. I will not attempt to make direct contact with 4RTNI or FLTDNI 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 data in any manner is prohibited.
  4. I will require anyone on my team who uses these data and anyone with whom I share these data to comply with this agreement.
  5. I will accurately provide the requested information for persons who will use these data and the analyses that are planned using these data.
  6. I will respond promptly and accurately to requests to update this information.
  7. I will comply with any rules and regulations imposed by my institution and its institutional review board (IRB) in requesting these data.

If I publish abstracts using data from 4RTNI or FTLDNI, I agree that:

  1. I will cite 4RTNI or FTLDNI as the source for data and their funding sources in the abstract as space allows.
  2. 4RTNI and FTLDNI will not be cited in the authorship line(s) of the abstract.
  3. For FTLDNI: After the named authors on the by-line of the manuscript, I will include the phrase "for the 4-Repeat Tauopathy Neuroimaging Initiative*" (for 4RTNI), where the asterisk refers to the following statement and list of names:

    Data used in preparation of this article were obtained from the 4-Repeat Tauopathy Neuroimaging Initiative (4RTNI) database (http://4rtni-ftldni.ini.usc.edu). The investigators at 4RTNI contributed to the design and implementation of 4RTNI and/or provided data, but did not participate in analysis or writing of this report (unless otherwise listed).

For FTLDNI: After the named authors on the by-line of the manuscript, I will include the phrase "for the Frontotemporal Lobar Degeneration Neuroimaging Initiative*", where the asterisk refers to the following statement and list of names:

Data used in preparation of this article were obtained from the Frontotemporal Lobar Degeneration Neuroimaging Initiative (FTLDNI) database (http://4rtni-ftldni.ini.usc.edu/ ). The investigators at FTLDNI contributed to the design and implementation of FTLDNI and/or provided data, but did not participate in analysis or writing of this report (unless otherwise listed).

For manuscripts using both FTLDNI and 4RTNI data, the above statements can be combined into a single statement.

  1. I will include language in the methods section of my manuscripts to accurately acknowledge the data gathering by 4RTNI and/or FTLDNI personnel. Depending on the length and focus of the article, it may be appropriate to include longer or shorter versions of the following example. Inclusion of some variant of the language below is mandatory.

Data used in the preparation of this manuscript were obtained from the 4-Repeat Neuroimaging Initiative (4RTNI) database and the Frontotemporal Lobar Degeneration Neuroimaging Initiative (FTLDNI) (http://4rtni-ftldni.ini.usc.edu/ ). 4RTNI was launched in early 2011 and is funded through the National Institute of Aging and The Tau Research Consortium. The primary goal of 4RTNI is to identify neuroimaging and biomarker indicators for disease progression in the 4-repeat tauopathy neurodegenerative diseases, progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD). FTLDNI is also founded through the National Institute of Aging, and started in 2010. The primary goals of FTLDNI are to identify neuroimaging modalities and methods of analysis for tracking frontotemporal lobar degeneration (FTLD) and to assess the value of imaging versus other biomarkers in diagnostic roles. The Principal Investigator of 4RTNI is Dr. Adam Boxer, MD, PhD, at the University of California, San Francisco. The data is the result of collaborative efforts at four sites in North America. For more information on 4RTNI, please visit: http://memory.ucsf.edu/research/studies/4rtni

The Principal Investigator of NIFD is Dr. Howard Rosen, MD at the University of California, San Francisco. The data is the result of collaborative efforts at three sites in North America. For up-to-date information on participation and protocol, please visit: http://memory.ucsf.edu/research/studies/nifd

  1. I will acknowledge funding in the support acknowledgment section using language similar to the following.

    Data collection and sharing for this project was funded by the 4-Repeat Tauopathy Neuroimaging Initiative (4RTNI) (National Institutes of Health Grant R01 AG038791) and through generous contributions from the Tau Research Consortium. The study is coordinated through the University of California, San Francisco, Memory and Aging Center. 4RTNI data are disseminated by the Laboratory for Neuro Imaging at the University of Southern California.

    Data collection and sharing for this project was funded by the Frontotemporal Lobar Degeneration Neuroimaging Initiative (National Institutes of Health Grant R01 AG032306). The study is coordinated through the University of California, San Francisco, Memory and Aging Center. FTLDNI data are disseminated by the Laboratory for Neuro Imaging at the University of Southern California.

    A combined statement may be used for projects using both FTLDNI and 4RTNI data.

  2. I will ensure that investigators who utilize 4RTNI or FTLDNI data use appropriate administrative, physical, and technical safeguards to prevent use or disclosure of the data other than as provided in this agreement.
  3. If I become aware of any use or disclosure of the 4RTNI or FTLDNI data not provided for in this Agreement, I will report it within 15 days.

IMPORTANT NOTE: It is policy to make analyzed data available as quickly as possible. However, data analysis may continue for years as methods for analysis of these datasets evolve. Therefore, I understand that any processed data I download may be preliminary and results may change as new analysis methods are developed. I will familiarize myself with the analysis methods so that I am aware of the limitations on these data prior to using them.

 Finally, because "preliminary data" will be posted on the database, I will note the version of any data I download and I will check the database to determine if updated data has been provided prior to submission of any material for publication.

 

I understand that failure to abide by these guidelines will result in termination of my privileges to access 4RTNI and FTLDNI data.
I Agree
I Disagree