Administrative Core

Mayo Clinic Rochester, Rochester MN

Investigators

Linked publications & trials

Abstract

Frontotemporal lobar degeneration (FTLD) represents the group of neurodegenerative proteinopathies that manifest as a spectrum of complex clinical syndromes. There are no FDA-approved interventions that positively affect symptoms, slow the rate of progression, or delay or prevent the development of symptoms for those who may develop FTLD. The ARTFL/LEFFTDS Consortium (2014-2019) and ALLFTD Consortium (2019-2025) programs have been productive and successful in advancing FTLD research by characterizing those with sporadic (s-) FTLD as well as those who are members of kindreds with familial (f-) FTLD. The Clinical Core (CC) has been the centerpiece for enrolling and longitudinally following these individuals with comprehensive clinical assessments, biofluid collection, MRI scans, and securing advance directive for autopsy. These activities will continue in ALLFTD2. Detailed clinical and neuropsychological data, including data from the National Alzheimer’s Coordinating Center (NACC) Uniform Data Set and FTLD Module, will be collected and uploaded to NACC. ALLFTD-specific data will also be collected, including data using digital health technologies. DNA, PBMCs, plasma, and CSF (optional) will also be collected, and the samples will be transferred and processed at National Centralized Repository for Alzheimer's Disease and Related Dementias (NCRAD). MRI scans using a standardized protocol will be completed and uploaded to the Laboratory of NeuroImaging (LONI). The CC will enroll 1450 unique persons over 5 years: 610 pts from f-FTLD kindreds (approx. 434 asymptomatic and 176 symptomatic) and 840 pts with s-FTLD. All participants will also be enrolled and followed as part of the online FTD Disorders Registry. Importantly, due to the lack of deep and frequent phenotypic data on key FTLD participants that is crucial for optimizing clinical trial design, a subset of participants in the late presymptomatic phase of f-FTLD, and early symptomatic phase of f- and s-FTLD, will undergo clinical, biofluid and imaging data/sample/scan collection every 3-6 months over a 12 month period. The data/samples/scans and associated findings generated from the CC and other cores will provide key data to the two projects to facilitate clinical trial planning. ALLFTD2 is designed to substantially and comprehensively increase the amount of longitudinal data and numbers of biospecimen samples and neuroimaging scans that are publicly available for research in FTLD, to foster development of disease-modifying therapies. The ALLFTD2 CC will continue to serve as the central platform for FTLD clinical research throughout North America.