Administrative Core

点击翻译按钮获取中文摘要

ABSTRACT – ARTFL LEFFTDS Longitudinal FTLD: ADMINISTRATIVE CORE We seek to model successful initiatives in other neurodegenerative disorders and expand our efforts in Advancing Research in Frontotemporal Lobar Degeneration (ARTFL) and Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS), both of which will end in mid-2019, to address many scientific and clinical-trial planning questions relating to FTLD. With ample guidance from our NIH scientific program officers and our Scientific Advisory Board, we are planning to combine the methodology and infrastructure of the ARTFL and LEFFTDS programs into one, expand to include collecting neuropathological data and specimens, and address ongoing and new goals. This combination of efforts in one cohesive program entitled, “ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD),” will better address the evolving need for FTLD research while retaining the many positive aspects of the original programs. The ALLFTD Administrative Core will integrate the input from NIH staff, the Scientific Advisory Board, Patient Advocacy Groups and Industry Partners with the six other cores and two projects to carry out the project goals, which includes providing an administrative structure to manage personnel and budgetary issues, communicate with NIA/NINDS, and oversee participant safety and compliance with NIH and other federal research standards. Additionally, the ALLFTD Administrative Core will promote academic FTLD research within and outside of the ALLFTD consortium by ensuring the collection and availability of high quality data. The ALLFTD Administrative Core will strive to ensure that all data, samples, and imaging scans are contributed to the national repositories such as the National Alzheimer's Coordinating Center (NACC), National Centralized Repository for Alzheimer's Disease and Related Dementias (NCRAD), and Laboratory of NeuroImaging (LONI). A partnership with the NIA/NINDS Program Officers and Patient Advocacy Group partners will assist the ALLFTD Administrative Core in many of its tasks, as well as provide guidance via regular web conferences and yearly meetings. The Patient Advocacy Group partners will also assist the ALLFTD Administrative core by providing education, outreach, and assistance with study recruitment. Lastly the ALLFTD Administrative Core will work closely with industry partners to create an ALLFTD-Treatment Unit. This treatment unit will have an administrative structure based on a set of internationally harmonized clinical trial principles and will promote pre-competitive collaborations, clinical trials, and data sharing with industry and research partnerships.