NIA AD/ADRD Health Care Systems Research Collaboratory

项目总结 超过500万美国人患有阿尔茨海默病(AD)或AD相关痴呆症(AD/ADRD)。这些高- 有需求，高成本的患者很容易接受质量差、不协调的护理，最终导致 不利的健康后果、较差的生活质量和滥用资源。就像联邦政府最近得出的结论- 资助痴呆症护理研究峰会，改善对残疾人及其CGs的护理是一项紧迫的公共卫生 必须通过高质量的证据来应对和告知这一挑战。虽然先前的研究已经阐明了 有机会改善对残疾人及其CGs的护理，采取了有希望的干预措施 由于缺乏评估其在“现实世界”条件下实施的有效性的研究而受阻。 嵌入医疗系统(HCS)的实用临床试验(EPCT)有可能加速 将循证干预措施转化为临床实践。自2012年成立以来，NIH Common 基金HCS研究合作实验室为推动开展ePCT作出了关键贡献。 然而，正如在2017年由国家情报机构赞助的一次会议上所得出的结论，与残疾人发展部及其协调小组开展的ePCT 值得特别关注的独特考虑。因此，这项提案的总体目标是在 NIH合作实验室建立国家老龄研究所AD/ADRD研究的模式 合作，由多位首席调查员、文斯·莫尔博士(布朗大学)和苏珊共同领导 Mitchell(希伯来语老年人生活(HSL))，由各自的机构共同管理。目标是：1. 建立AD/ADRD合作实验室的基础设施，2.制定和传播 与中心合作，在残疾人及其社区干事中开展各方面的ePCT；3.加强研究 发展和研究人员在残疾人中心及其中心内开展ePCT的能力；4.至 传播知识和最佳实践，让利益相关者参与这项研究。经验丰富的调查员 来自全国各地的将领导以下工作组核心：1.技术和数据(B)，J.拜纳姆，医学博士， 公共卫生硕士；2.法规与伦理学(C)，J.卡拉维什，医学博士；3.设计与统计(D)，H.Allore，博士；4.试点研究 (E)A.Brody，PhD，RN；5.患者和CG报告的结果(F)，L.Hanson，MD，MPH；6.传播和 实施(G)，L.Gitlin，Phd/J.Gaugler，Phd；7.HCS(H)：E.Larson，MD，mph and Training(I)：C. Callahan医学博士/A.Torke医学博士。管理核心(A)将整合整个合作实验室的所有关键职能。 影响：迫切需要改善医疗服务机构为残障人士及其CGs提供的护理。进行ePCTS 非常适合于测试旨在改善其健康结果的干预措施的有效性，但需要 具体的专业知识、方法、数据来源和行业伙伴关系。知识，调查 AD/ADRD合作实验室产生的经验、协作和证据具有转变的潜力 为患有AD/ADRD及其CGs的各种背景的美国人提供护理的交付、质量和结果。

PROJECT SUMMARY Over five million Americans have Alzheimer's disease (AD) or an AD-related dementia (AD/ADRD). These high- need, high-cost patients are vulnerable to receiving poor quality, uncoordinated care, ultimately leading to adverse health outcomes, poor quality of life, and misuse of resources. As recently concluded by the federally- funded Research Summit on Dementia Care, improving the care of PWD and their CGs is an urgent public health challenge that must be met and informed by high quality evidence. While prior research has elucidated opportunities to improve the care of PWD and their CGs, the adoption of promising interventions has been stymied by the lack of research evaluating their effectiveness when implemented under “real-world” conditions. Pragmatic clinical trials embedded (ePCTs) in healthcare systems (HCS) have the potential to accelerate the translation of evidence-based interventions into clinical practice. Since its inception in 2012, the NIH Common Fund HCS Research Collaboratory has made pivotal contributions towards advancing the conduct of ePCTs. However, as concluded in a 2017 NIA-sponsored conference, ePCTs conducted with PWD and their CGs have unique considerations that merit specific focus. Thus, the overarching objective of this proposal is to build on the model of the NIH Collaboratory to establish the National Institute on Aging (NIA) AD/ADRD Research Collaboratory, co-led by the multiple principal investigators (MPIs), Drs. Vince Mor (Brown University) and Susan Mitchell (Hebrew SeniorLife (HSL)) and co-administered by their respective institutions. The Aims are: 1. To establish the infrastructure of the AD/ADRD Collaboratory, 2. To develop and disseminate guidelines for the conduct of all aspects of ePCTs among PWD and their CGs in partnership with HCS, 3. Enhance research development and investigator capacity to conduct ePCTs in PWD and their CGs within HCS, and 4. To disseminate knowledge and best practices to engage stakeholders in this research. Accomplished investigators from across the nation will lead the following Working Group Cores: 1. Technical and Data (B), J. Bynum, MD, MPH; 2. Regulation and Ethics (C), J. Karlawish, MD; 3. Design and Statistics (D), H. Allore, PhD; 4. Pilot Studies (E), A. Brody, PhD, RN; 5. Patient and CG Reported Outcomes (F), L. Hanson, MD, MPH; 6. Dissemination and Implementation (G), L. Gitlin, PhD/J. Gaugler, PhD; 7. HCS (H): E. Larson, MD, MPH, and Training (I): C. Callahan MD/A. Torke MD. An Administration Core (A) will integrate all critical functions across the Collaboratory. IMPACT: There is an urgent need to improve care provided by HCS for PWD and their CGs. ePCTs conducted are ideally-suited to test the effectiveness of interventions aimed at improving their health outcomes but require specific expertise, methodology, data sources, and industry partnerships. The knowledge, investigative experience, collaborations, and evidence generated by an AD/ADRD Collaboratory has the potential to transform the delivery, quality, and outcomes of care for Americans from all backgrounds with AD/ADRD and their CGs.