NIFD (FTLDNI)
Neuroimaging in Frontotemporal Dementia (Frontotemporal Lobar Degeneration Neuroimaging Initiative)
Longitudinal brain MRI, biofluids and clinical ratings from people with frontotemporal lobar degeneration and age-matched healthy controls, collected to find imaging markers that track progression for future treatment trials. Shared through LONI after an approved application.
Overview
NIFD, the LONI project name for the Frontotemporal Lobar Degeneration Neuroimaging Initiative (FTLDNI), is a longitudinal observational study of frontotemporal lobar degeneration (FTLD). It was set up by the Memory and Aging Center at UCSF, led by Howard Rosen and funded by the National Institute on Aging under grant R01 AG032306, reusing the infrastructure of the Alzheimer's Disease Neuroimaging Initiative. The goal was to find which imaging methods and brain regions follow FTLD progression with the least variance, so that future drug trials can be sized. Data are distributed by LONI through the Image and Data Archive after an application and the data use agreement shared with the companion 4RTNI study.
Composition
The grant planned 120 patients with FTLD and 120 age-matched healthy controls, followed for about one year. Patients carry clinical diagnoses within the FTLD spectrum, such as behavioral variant frontotemporal dementia and the semantic and nonfluent variants of primary progressive aphasia. LONI states that NIFD uses the same controls as 4RTNI. The number of participants actually released is not published by the study.
Acquisition
Data were collected at three North American sites: UCSF, Massachusetts General Hospital and Mayo Clinic Rochester. MRI was acquired at 3T on Siemens Tim Trio scanners at UCSF and MGH and on a GE scanner at Mayo. The imaging protocol matches that of 4RTNI and covers structural MRI for gray matter volume, diffusion imaging and arterial spin labeling perfusion. The grant planned FDG-PET for all participants and PIB amyloid PET for all patients, plus blood, urine and cerebrospinal fluid; no public source confirms that the PET scans were released.
Annotations
Diagnoses were made at a multidisciplinary consensus conference using the criteria current at enrollment. Clinical, neuropsychological and functional assessments with an informant interview accompany the images.
Known limitations
No data descriptor reports the size or composition of the shared release, so no counts are given here. The only planned numbers come from the grant abstract. Follow-up intervals are irregular, and diffusion and ASL analyses in the study papers used UCSF data only. LONI warns that downloaded data may be preliminary and asks users to record the data version.
License and access
Our reading of the license, not legal advice. Before you use the data, read the original license and confirm that your use is allowed. We take no responsibility for how you use a dataset. Full disclaimer
A research proposal is reviewed and approved
4RTNI and FTLDNI Data Use Agreement
One click-through agreement covers both 4RTNI and FTLDNI data on the LONI IDA. Use is for scientific investigation, teaching or planning clinical research, as stated in a data use application. Redistribution in any form is prohibited, and publications must credit the initiative in the by-line, methods and funding text.
What you can do
- Not stated
- Not stated
- Not stated
- Yes
- Conditional
What you can share
- No
- No
- Not stated
What you must do
- Yes
- Share alike No
- Yes
- Conditional
- Manuscript review No
- Release code No
- Return results No
- Delete after use No
Limits
- Yes
- No
Citation
The data use agreement requires the by-line phrase "for the Frontotemporal Lobar Degeneration Neuroimaging Initiative" with its footnote, a methods paragraph acknowledging the data gathering by FTLDNI, and the funding acknowledgement (NIH grant R01 AG032306, coordinated through the UCSF Memory and Aging Center, disseminated by the Laboratory for Neuro Imaging at USC).
Sources
Every number on this page comes from one of these documents. Each chart names the table or page it is taken from. The raw numbers are in stats.csv.
- LONI IDA, NIFD data use application and agreement website
- NIH RePORTER, R01 AG032306, The Frontotemporal Lobar Degeneration Neuroimaging Initiative (Rosen HJ) website
- Staffaroni AM et al. 2019, Longitudinal multimodal imaging and clinical endpoints for frontotemporal dementia clinical trials, Brain paper
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