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型，并扩大我们在以下方面的努力： 额颞叶变性及其家族性纵向评估的研究进展 额颞叶痴呆症受试者（LEFFTDS），这两个项目都将在2019年年中结束，以解决许多科学问题。 以及与FTLD相关的临床试验计划问题。在我们国家卫生研究院科学项目的充分指导下 我们正计划将联合收割机的方法和基础设施结合起来， 将ARTFL和LEFFTDS计划合并为一个，扩展到包括收集神经病理学数据， 标本，并解决正在进行的和新的目标。这种努力的结合在一个有凝聚力的计划， “ARTFL LEFFTDS纵向额颞叶变性（ALLFTD）”，将更好地解决 在保留原有计划的许多积极方面的同时，不断发展对FTLD研究的需求。的 ALLFTD管理核心将整合NIH工作人员、科学顾问委员会、患者 倡导团体和行业伙伴与其他六个核心和两个项目，以实现项目目标， 其中包括提供一个行政结构，以管理人事和预算问题， 与NIA/NINDS，并监督参与者的安全性和遵守NIH和其他联邦研究 标准此外，ALLFTD行政核心将促进FTLD学术研究， 通过确保高质量数据的收集和可用性，关于ALLFTD 管理核心将努力确保所有数据、样本和成像扫描都贡献给 国家知识库，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知识库（NCRAD）和神经影像实验室 （洛尼）。与NIA/NINDS项目官员和患者倡导小组合作伙伴的合作将有助于 在其许多任务中，以及通过定期网络会议提供指导 年度会议。患者倡导小组合作伙伴还将通过以下方式协助ALLFTD管理核心： 提供教育、外展和研究招募协助。最后，ALLFTD行政核心 将与行业合作伙伴密切合作，创建一个ALLFTD治疗单位。该治疗装置将具有 根据一套国际统一的临床试验原则建立行政结构，并将促进 竞争前合作、临床试验以及与行业和研究合作伙伴的数据共享。

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.