Proposing New Research Studies, Partnering with ARTFL, and Utilizing Clinical Data and Biological Specimens:

ARTFL has been established not only to conduct the initial set of investigations that the investigators have outlined (goals of ARTFL), but also to provide an ongoing resource for collaboration with other investigators around the world. We welcome the potential to utilize ARTFL resources to advance biomedical science in areas ranging from basic laboratory to clinical therapeutics to clinical epidemiology, and other aspects of patient-oriented clinical investigation.

If you are an investigator interested in partnering with ARTFL, we ask that you initially contact the Principal Investigator of ARTFL, Dr. Adam Boxer with a brief summary (one paragraph) of your proposal. If the proposal seems feasible, you will be asked to provide a more detailed protocol summary.

ARTFL shares a common infrastructure with the closely related study, Longitudinal Evaluation of Familial Frontotemporal Dementia (U01 AG045390), which focuses on genetic forms of FTLD arising from mutations in 3 FTLD-associated genes (MAPT, C9orf72, GRN).  A brief description of LEFFTDS can be found  here.  All data and resource sharing occurs jointly between the two studies.

Please see the list of Available Data.  Biospecimens are available through NCRAD.  MRI Scans are available for a subset of participants, and may be obtained through LONI.  The flow of data requests through ARTFL/LEFFTDS is shown here.

Please review the ARTFL/LEFFTDS Data Sharing and Publication policy, and refer to the ARTFL-LEFFTDS Data Guide and ARTFL-LEFFTDS Data Display Guidelines for more information.  We provide global scores for the FTLD-CDR.  These are calculated according to the rules shown in the FTLD-CDR Scoring Guide.  We strongly recommend the use of the FTLD-CDR over the standard CDR for these data.

To request clinical data, use the ARTFL-LEFFTDS Data Request Form.  The ARTFL-LEFFTDS Data Management team will review all requests as quickly as possible.  Please email ARTFL Management with any questions.

For Biospecimen requests, please complete the Biospecimen Request Form.