Administrative Core

摘要-ARTFL LEFFTDS纵向FTLD：管理核心 我们寻求在其他神经退行性疾病中建立成功的模式，并扩大我们在 额颞叶变性(ARTFL)及家族性纵向评估的研究进展 额颞叶痴呆受试者(LEFFTDS)，这两个项目都将于2019年年中结束，以解决许多科学问题 以及与FTLD相关的临床试验规划问题。在我们NIH科学项目的充分指导下 官员和我们的科学顾问委员会，我们计划将方法和基础设施相结合 ARTFL和LEFFTDS计划合而为一，扩展到包括收集神经病理数据和 样本，并解决正在进行的和新的目标。这一努力的结合在一个名为， “ARTFL LEFFTDS纵向额颞叶变性(ALLFTD)”将更好地解决 对FTLD研究的不断发展的需求，同时保留了原始计划的许多积极方面。这个 ALLFTD管理核心将整合NIH工作人员、科学咨询委员会、患者 倡导团体和行业伙伴与其他六个核心和两个项目一起执行项目目标， 这包括提供一个管理结构来管理人事和预算问题，沟通 与NIA/NINDS合作，监督参与者的安全并遵守NIH和其他联邦研究 标准。此外，ALLFTD行政核心将促进学术FTLD研究和 在ALLFTD联合体之外，确保收集和获得高质量的数据。ALLFTD 管理核心将努力确保所有数据、样本和成像扫描都有助于 国家资料库，如国家阿尔茨海默氏症协调中心(NACC)，国家集中 阿尔茨海默病和相关痴呆症资料库(NCRAD)和神经成像实验室 (Loni)。与NIA/NINDS项目官员和患者倡导组织合作伙伴将提供帮助 ALLFTD管理核心在其许多任务中，以及通过定期网络会议提供指导 和年度会议。患者权益倡导组织的合作伙伴还将通过以下方式协助ALLFTD管理核心 提供教育、外展服务，并协助招生。最后，ALLFTD管理核心 将与行业合作伙伴密切合作，创建ALLFTD治疗单位。这个治疗单元将有一个 以一套国际协调的临床试验原则为基础的管理结构，并将促进 与行业和研究合作伙伴进行竞争前协作、临床试验和数据共享。

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.