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.
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.