Biological heterogeneity in ADRD

ADRD 的生物异质性

基本信息

批准号：
10654484
负责人：
Thomas J. Grabowski
金额：
$ 26.98万
依托单位：
UNIVERSITY OF WASHINGTON
依托单位国家：
美国
项目类别：
财政年份：
2020
资助国家：
美国
起止时间：
2020-06-01 至 2025-04-30
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10654484
关键词：
Abbreviations Address Adverse effects Age Alzheimer&apos s Disease Alzheimer&apos s disease related dementia Amyloid beta-Protein Area Autopsy Awareness Biological Assay Brain Brain Injuries Brain region Clinical Clinical Data Clinical Distribution Clinical Trials Cognitive Collaborations Collection Communication Communities Consent Data Data Set Databases Documentation Enrollment Family Funding Future Generations Goals Guidelines Healthcare Heterogeneity Human Impairment Improve Access Individual Informed Consent Infrastructure Interview Knowledge Lewy Body Disease Measures Medical Examiners Medical Records Metadata Multiomic Data Neurodegenerative Disorders Outcome Participant Pathologic Pathway interactions Patients Persons Pharmacology Pilot Projects Population Population Heterogeneity Preparation Procedures Prospective cohort Protocols documentation Recommendation Registries Reproducibility Research Research Personnel Resources Sampling Scientist Signal Transduction Site Standardization Testing Therapeutic Intervention Therapeutic Studies Tissue Banks Tissues Underrepresented Populations United States National Institutes of Health Universities Washington aging brain base biobank biological heterogeneity brain research brain tissue comorbidity data resource data sharing diagnostic strategy family structure high standard hippocampal sclerosis human tissue improved meetings mind control molecular phenotype neuropathology non-demented outreach preservation programs protein TDP-43 responders and non-responders response symposium tau-1 therapeutically effective tissue resource training opportunity working group

项目摘要

Abstract: Alzheimer's disease and related dementias (ADRD) represent a healthcare crisis of epic proportions as the US populations continues to age. The AD Research Centers (ADRC) and the NeuroBiobank (NBB), both funded by NIH, represent two separate networks both focused on promoting and supporting human brain research, the former focused on ADRD in well-characterized prospective cohorts with the deepest expertise and infrastructure for ADRD neuropathology, and the latter with the broadest network with well-established coordination across center, outreach pipelines, and data and tissue sharing mechanisms. The 2017 ADC Panel Recommendations included multiple focused on ADRD neuropathology, including developing mechanisms for inclusion of donors from underrepresented groups and non-demented (control) donors, increasing engagement with and opportunity for local communities to participate in brain donation, and enhancing collaborations across the ADRC and NBB networks to promote brain donation and research brain tissue utilization by scientists focused on ADRD. In response, an ADRC-NBB working group was established to explore opportunities to meet this need, resulting in formation of a pilot program to test some of these solutions. This proposal is for support of the UW site for this pilot study, which has five aims that, when successfully completed, will develop, implement, and test mechanisms across ADRC and NBB to identify and consent ADRD brain donors, including controls, in a coordinated manner nationally, to collect brains from consented donors who pass using procedures optimized for maximum tissue quality for research, to perform state-of-the-art neuropathological examination, to supplement this data with critical donor metadata through structured family interviews and medical records reviews, to share this deidentified information across the networks and with researchers across the US, and to fill data and tissue requests from these donors, based on this infrastructure, to support ADRD research. When successfully completed, this pilot study will have helped identify effective mechanisms/protocols/pipelines to support human brain donation and research that will ultimately help propel ADRD research toward mechanistic knowledge, improved diagnostic strategies, and effective therapeutic interventions.

抽象的：阿尔茨海默病和相关痴呆症 (ADRD) 代表了美国前所未有的医疗保健危机人口继续老龄化。 AD 研究中心 (ADRC) 和 NeuroBiobank (NBB)，均由 AD 研究中心 (ADRC) 和 NeuroBiobank (NBB) 资助由 NIH 组成，代表两个独立的网络，都专注于促进和支持人脑研究，前者专注于具有最深厚专业知识的特征明确的前瞻性队列中的 ADRD ADRD 神经病理学基础设施，后者拥有最广泛的网络和完善的跨中心、外展渠道以及数据和组织共享机制的协调。 2017年ADC 小组建议包括多项针对 ADRD 神经病理学的建议，包括开发纳入代表性不足群体的捐助者和非痴呆（对照）捐助者的机制，增加当地社区参与脑捐赠的参与度和机会，以及加强 ADRC 和 NBB 网络之间的合作，以促进大脑捐赠和大脑研究科学家们专注于 ADRD 的组织利用。为此，ADRC-NBB 工作组成立，探索满足这一需求的机会，从而形成一个试点计划来测试其中的一些解决方案。该提案是为了支持威斯康星大学网站进行这项试点研究，该研究有五个目标：成功完成，将在 ADRC 和 NBB 之间开发、实施和测试机制，以识别和同意 ADRD 大脑捐赠者（包括对照者）以全国协调的方式收集来自同意的捐赠者通过使用优化程序以最大程度地提高组织质量进行研究，以进行最先进的神经病理学检查，通过关键的捐赠者元数据补充这些数据结构化的家庭访谈和医疗记录审查，以在整个范围内共享这些去识别化的信息网络并与美国各地的研究人员合作，并根据这些捐赠者的要求填写数据和组织请求该基础设施用于支持 ADRD 研究。成功完成后，这项试点研究将有助于确定有效的机制/协议/管道来支持人脑捐赠和研究，这将最终帮助推动 ADRD 研究走向机械知识、改进诊断策略和有效的治疗干预。