LONI | NIFD Data Use Agreement

NIFD is the nickname for the frontotemporal lobar degeneration neuroimaging initiative (FTLDNI, AG032306), which was funded by the NIA and NINDS to characterize longitudinal clinical and imaging changes in FTLD. The imaging and clinical methods are the same for NIFD and for the 4-Repeat Tauopathy Neuroimaging Initiative (4RTNI), which is also available for download from LONI. Controls for NIFD are the same controls as those collected for 4RTNI.

I request access to data collected by the Neuroimaging in Frontotemporal Dementia (NIFD/FLTDNI) for the purpose of scientific investigation, teaching, or the planning of clinical research studies and I agree to the following terms:

I will receive access only to de-identified data and will not attempt to establish the identity of NIFD/FTLDNI subjects.
I will not attempt to make direct contact with NIFD/FTLDNI PIs or staff at sites concerning the specific results of individual subjects.
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.
I will require anyone on my team who uses these data and anyone with whom I share these data to comply with this agreement.
I will accurately provide the requested information for persons who will use these data and the analyses that are planned using these data.
I will respond promptly and accurately to requests to update this information.
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 NIFD/FTLDNI, I agree that:

I will cite NIFD/FTLDNI as the source for data and their funding sources in the abstract as space allows.
NIFD/FTLDNI investigators will not be cited in the authorship line(s) of the abstract.
For NIFD/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 Data used in preparation of this article were obtained from the Frontotemporal Lobar Degeneration Neuroimaging Initiative (FTLDNI) database. The investigators at NIFD/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). The FTLDNI investigators included the following individuals:

Howard Rosen; University of California, San Francisco (PI)

Bradford C. Dickerson; Harvard Medical School and Massachusetts General Hospital

Kimoko Domoto-Reilly; University of Washington School of Medicine

David Knopman; Mayo Clinic, Rochester

Bradley F. Boeve; Mayo Clinic Rochester

Adam L. Boxer; University of California, San Francisco

John Kornak; University of California, San Francisco

Bruce L. Miller; University of California, San Francisco

William W. Seeley; University of California, San Francisco

Maria-Luisa Gorno-Tempini; University of California, San Francisco

Scott McGinnis; University of California, San Francisco

Maria Luisa Mandelli; University of California, San Francisco
I will include language in the methods section of my manuscripts to accurately acknowledge the data gathering by NIFD/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.

FTLDNI was funded through the National Institute of Aging, and started in 2010. The primary goals of FTLDNI were 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 NIFD was Dr. Howard Rosen, MD at the University of California, San Francisco. The data are 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

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 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.
I will ensure that investigators who utilize NIFD/FTLDNI data use appropriate administrative, physical, and technical safeguards to prevent use or disclosure of the data other than as provided in this agreement.
If I become aware of any use or disclosure of the NIFD/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 NIFD/FTLDNI data.