The Frontotemporal Lobar Degeneration Clinical Research Consortium (FTLD CRC) will build an Administrative Unit (AU) headquarted at UCSF. The overall goal of the AU is to effectively and responsively carry out administrative functions to support and achieve the overall aims of the Consortium. The AU staff will consist of the Administrative Director, Howard Rosen M.D., the FTLD CRC PI, Adam Boxer M.D., Ph.D. and statistician, Iryna Lobach, Ph.D. who will be assisted by an administrative nurse, a programmer and a research associate. The AU, in consultation with the RDCRC Steering Committee, the assigned NIH scientific officer, the site PIs, the External Advisory Board which includes Patient Advocacy Group leaders, will coordinate operations across the 13 enrolling sites that include: UCSF, Columbia (PI: Huey), Harvard (PI: Dickerson), Johns Hopkins (PI: Onyike), Mayo Clinic, Jacksonville (PI: Graff-Radford),Mayo Clinic, Rochester (PI: Knopman), Northwestern (PI: Weintraub),University of British Columbia (UBC;PI: Hsiung;co- PI's Mackenzie and Feldman), University of California, Los Angeles (PI: Bordelon;co-PI Mendez),University of California, San Diego (PI: Litvan), University of North Carolina PI: Kaufer), University of Pennsylvania (coPI: Irwin and, co-l: Grossman) and University of Toronto ( PI: Tartaglia). The AU will oversee enrollment for each of the research and pilot projects, including monitoring data entry, biospecimen collection, genetic and biomarker data, and MRI acquisition, and will manage enrollment-dependent reimbursement to the sites. It will arrange "in person meetings, conference calls and electronic communications for the FTLD CRC members, the EAB and other consortium members. The AU will work with the DMCC to build a website and patient registry to support the FTLD CRC and to provide education to patients, families and physicians. The AU statistician, programmer and research assistant will support the data sharing components of this proposal and will assist FTLD CRC and external researchers. The AU will build upon powerful information technology resources provided by UCSF to the FTLD CRC to achieve its aims.

Public Health Relevance

Frontotemporal Lobar Degeneration (FTLD) is a group of rare, fatal brain diseases that cause thinking and movement problems and for which there are currently no effective therapies. This project will build an admistrative unit to support a North American clinical research network that will prepare for studies of new FTLD treatments in human patients.

National Institute of Health (NIH)
National Institute of Neurological Disorders and Stroke (NINDS)
Specialized Center--Cooperative Agreements (U54)
Project #
Application #
Study Section
Special Emphasis Panel (ZTR1-CI-8 (01))
Program Officer
Sutherland, Margaret L
Project Start
Project End
Budget Start
Budget End
Support Year
Fiscal Year
Total Cost
Indirect Cost
University of California San Francisco
San Francisco
United States
Zip Code
Santos-Santos, Miguel A; Mandelli, Maria Luisa; Binney, Richard J et al. (2016) Features of Patients With Nonfluent/Agrammatic Primary Progressive Aphasia With Underlying Progressive Supranuclear Palsy Pathology or Corticobasal Degeneration. JAMA Neurol 73:733-42
Block, Nikolas R; Sha, Sharon J; Karydas, Anna M et al. (2016) Frontotemporal Dementia and Psychiatric Illness: Emerging Clinical and Biological Links in Gene Carriers. Am J Geriatr Psychiatry 24:107-16
Onyike, Chiadi U (2016) Psychiatric Aspects of Dementia. Continuum (Minneap Minn) 22:600-14
Hewer, Sarah; Varley, Sue; Boxer, Adam L et al. (2016) Minimal clinically important worsening on the progressive supranuclear Palsy Rating Scale. Mov Disord 31:1574-1577
Goetzl, Edward J; Kapogiannis, Dimitrios; Schwartz, Janice B et al. (2016) Decreased synaptic proteins in neuronal exosomes of frontotemporal dementia and Alzheimer's disease. FASEB J 30:4141-4148
Dutt, Shubir; Binney, Richard J; Heuer, Hilary W et al. (2016) Progression of brain atrophy in PSP and CBS over 6 months and 1 year. Neurology 87:2016-2025
Nandipati, Sirisha; Litvan, Irene (2016) Environmental Exposures and Parkinson's Disease. Int J Environ Res Public Health 13:
Tsai, Richard M; Lobach, Iryna; Bang, Jee et al. (2016) Clinical correlates of longitudinal brain atrophy in progressive supranuclear palsy. Parkinsonism Relat Disord 28:29-35
Rojas, Julio C; Karydas, Anna; Bang, Jee et al. (2016) Plasma neurofilament light chain predicts progression in progressive supranuclear palsy. Ann Clin Transl Neurol 3:216-25
Rojas, Julio C; Boxer, Adam L (2016) Neurodegenerative disease in 2015: Targeting tauopathies for therapeutic translation. Nat Rev Neurol 12:74-6

Showing the most recent 10 out of 35 publications