The Advancing Research and Treatment for Frontotemporal Lobar Degeneration (ARTFL) consortium is an integrated group of academic medical centers partnered
with patient support organizations and dedicated to conducting clinical research in sporadic and familial frontotemporal lobar degeneration (FTLD)
syndromes. ARTFL is funded by the National Institutes of Health and is part of the Rare Diseases Clinical Research Network. The operations of the ARTFL
consortium are based at the University of California, San Francisco, and there are currently fourteen clinical study sites in the United States and Canada.
The ARTFL project will establish a large cohort of patients with FTLD syndromes including Corticobasal Degeneration Syndrome (CBD or CBS), primary progressive aphasias (PPA)
including semantic variant (svPPA) and non-fluent variant (nvPPA), behavioral variant Frontotemporal Dementia (bvFTD), Frontotemporal Dementia with
Amyotrophic Lateral Sclerosis (FTD-ALS), and Progressive Supranuclear Palsy (PSP). Healthy family members of patients with genetic causes of FTLD will
also be enrolled.
Approximately 1,560 patients and family members will participate in on-site evaluations that will include medical exams, clinical assessments of cognition
and functioning, questionnaires and surveys, and biological specimens. Patients and family members with familial FTLD syndromes may be followed
longitudinally. Using the cohort data, we will conduct projects to discover new biomarkers for disease activity, standardize diagnostic criteria, and
identify a large group of potential participants for clinical trials of new targeted therapeutic agents. Patients do not need to be enrolled in all studies
to participate in ARTFL activities.
All of the participating ARTFL centers are expert centers for the diagnosis and management of FTLD syndromes. The primary purpose of the ARTFL consortium
is to conduct research, but it is anticipated that patients and their doctors may be interested in clinical evaluation as well as research participation.
The generous support of the NIH has provided us with the resources necessary to create this ongoing clinical research infrastructure and the ARTFL
investigators are excited to be involved in this large collaborative effort.