Clinical Data
Demographics
Neuropsychology Scores
Functional
Diagnoses & Disease Severity
Plasma NfL levels (subset of participants)
Volumetric MRI
Data request process. Please note that NACC data are available independently, but ALLFTD can not match NACC-provided datasets with other data. Click for larger view.
Data are available for >2000 participants seen through ALLFTD and its predecessor projects, ARTFL and LEFFTDS.
Data freezes are performed quarterly (February, May, August, November), and data requests will be fulfilled based on the most proximal data freeze.
Please see the list of available data.
Please review the ALLFTD Policies on Data Sharing and Publication, and refer to the Data Guide and Data Display Guidelines for more information. We provide global scores for the 8-domain Clinical Dementia Rating Scale (CDR) with NACC FTLD. These are calculated according to the rules shown in the CDR plus NACC FTLD Scoring Guide. We strongly recommend the use of the global score over the standard CDR for these data.
To request clinical data, use the Data Request Form. All clinical data requests should provide a brief description of research goals and analysis plan. The ALLFTD Data Management team will reviews all requests and may reach out for additional information prior to review. Reviews generally take ~1 month. Requests are reviewed to protect participant confidentiality and to minimize duplication of efforts and conflicts among investigators. Please email ALLFTD Management with any questions.
This form may also be used to request MRI data. Please see description of available MRI below.
FLUID BioSPECIMENS
Plasma
DNA
PBMCs
RNA
Serum
CSF (in a subset of participants)
Biospecimen request process. Minimal clinical data set is provided when results are returned for unblinding. Additional clinical data may be requested after unblinding. Click for larger view.
ALLFTD collects blood for biomarker analyses in all participants. A subset of participants also provide CSF (optional).
The biospecimen collection protocol for ALLFTD continues the standards created for LEFFTDS and ARTFL; all biospecimens are available through a combined repository at NCRAD.
ReqUESTING Biospecimens: General INFO
All biospecimen requests are reviewed by the ALLFTD Biospecimen Review Committee; requests are reviewed approximately every two months. Requests are assessed for scientific merit, feasibility, and investigator experience. Additional factors include overlap with other requests, funding, and specimen availability.
Approved biospecimen requests are fulfilled through NCRAD. All biospecimens are provided blinded; when results are returned to ALLFTD, a subset of clinical data (including, but not limited to, age range, gender, clinical phenotype) will be provided to the investigator. If you require more detailed clinical data after unblinding, you may submit a request to the ALLFTD Data Management team, providing information referencing the biospecimen request. The clinical data request should include a list of the IDs returned with the unblinding. Note: Detailed clinical data to match biospecimen samples will generally not be provided until after the initial results are returned and unblinding completed.
Returned biomarker results may be incorporated into the ALLFTD clinical dataset for distribution after an embargo period.
Biospecimens are available in the following aliquot volumes:
Plasma: 200 ul
Serum: 200 ul
CSF: 200 ul
Buffy Coat: 5 ug
PBMC: 1 vial 2.4 x 10^6 (standard)
RNA: 1 vial 2ug total RNA
MRI
Quantitative volumes (based on the Desikan atlas):
Quantitative volumetric information is available as part of the clinical dataset request process. These datasets with clinical and volumetric MRI data will be available to any qualified investigator who completes an approved ALLFTD clinical data request and signs the data use agreement. Updates will be made to the volumetric data at approximately 6-month intervals. To obtain updated information, please submit a clinical data request and provide the name of your current dataset.
Updates will be made to the volumetric data at approximately 6-month intervals. To obtain updated information, please submit a clinical data request and provide the name of your current dataset.
Raw MR Images
Effective July 2023, investigators may request raw images from ALLFTD. These images are provided with minimal header information and have been refaced (Schwarz et al., 2022) to protect participant confidentiality. When a data request for images has been approved, the ALLFTD Data Manager will provide access to download the images directly from the “FTLD” project on LONI.
Two options are available for raw MR images:
MR images with minimal clinical dataset: if approved, this is the fastest option and may be sufficient for many analyses. The minimal clinical dataset will be downloadable through LONI as well.
MR images with a full clinical dataset: the same process will be followed to provide access to the images, but a full dataset will be distributed via secure email. This may be somewhat delayed following approval. Additionally, it is possible that scans will be downloadable without the visit passing requirements for the ALLFTD data freeze; these visits will be missing from the standard shared dataset.