Cleveland Precision Medicine Chronic Kidney Disease Cohort

克利夫兰精准医学慢性肾脏病队列

• 批准号: 10492794
• 负责人: JOHN F. O'TOOLE
• 金额: $ 45万
• 依托单位: CLEVELAND CLINIC LERNER COM-CWRU
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-09-15 至 2027-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10492794
• 关键词: Acute Renal Failure with Renal Papillary Necrosis; Adherence; Affect; Altruism; American; Atlases; Awareness; Biological Markers; Biomedical Research; Biopsy; Black race; COVID-19 pandemic; Cell physiology; Charge; Chronic Kidney Failure; Clinic; Clinical; Clinical Data; Collection; Communities; Complex; Core Biopsy; Data; Data Set; Diabetes Mellitus; Diabetic Nephropathy; Disease; Education; Electronic Health Record; Enrollment; Ensure; Ethics; Event; Fostering; Funding; Funding Opportunities; Future; Genome; Goals; Health; Hypertension; Individual; Kidney; Kidney Diseases; Medical; Medicine; Metadata; Molecular; Participant; Pathology; Patients; Persons; Population Heterogeneity; Protocols documentation; Public Health; Quality Control; Research; Research Design; Research Project Grants; Research Subjects; Resources; Secure; Site; Specific qualifier value; Subgroup; Time; Tissue atlas; Tissues; Trust; Variant; Visit; Work; clinical phenotype; clinically actionable; cohort; common treatment; community engagement; community partnership; cost; data repository; experience; follow-up; hispanic community; innovation; kidney biopsy; member; minority communities; molecular phenotype; molecular scale; patient screening; precision medicine; recruit; research study; response; success; synergism; telehealth; tool; virtual; working group

Goals. The Cleveland Chronic Kidney Disease Recruiting Site (CLE-CKD-RS) has been a member of the KPMP since its inception 5 years ago and will continue to recruit a cohort of CKD patients with diabetic kidney disease (DKD) and hypertension-attributable CKD (H-CKD), building on our demonstrated successes. To meet our proposed recruiting targets, we will expand patient screening to the Cleveland Clinic main campus general medicine clinic and CKD clinics in regional facilities, focusing on sites that serve minority communities. The CLE- CKD-RS will strengthen and broaden its relationships with diverse communities to foster trust and ensure the Cleveland KPMP cohort reflects the people most burdened by kidney diseases. Background. Kidney diseases are common, costly and deadly. The Kidney Precision Medicine Project (KPMP) is building a resource, which will have patient-level clinical datasets and molecular phenotypes, to identify hidden, clinically actionable subgroups of people with kidney diseases for discovery of mechanisms, biomarkers and new treatments. The KPMP hypothesizes proposes integration of multidimensional patient data, omic level molecular data and variation in genome sequence will generate tools necessary for needed innovation. CLE-CKD-RS: synergy with and value to KPMP. In the first funding cycle the CLE-CKD-RS research team has successfully executed KPMP protocols to ethically and safely enroll, biopsy and retain a diverse cohort of KPMP participants. In addition, The CLE-CKD-RS has established an engaged Community Advisory Board and used opportunities to educate the medical and patient communities about the KPMP, the burden of kidney diseases and approaches to promote kidney health. Although KPMP activities were first suspended and then slowed by the public health response to the COVID pandemic, the CLE-CKD-RS used telehealth tools to follow our cohort and rapidly restarted activities when permitted. This experience has prepared for future black swan events. Members of the CLE-CKD-RS team serve on KPMP working groups and committees as members and leaders. We participate in two CKD extended clinical phenotyping studies funded by the Opportunity Pool funds and engaged other local investigative groups to join the KPMP by winning Opportunity Pool funding. Building upon these successes, we are proposing the following Milestones: 1. Safely and ethically collect 30-40 research kidney biopsies per year from eligible individuals with H-CKD or DKD with target aggregate enrollment of 180 CKD participants for the 5 year funding period. 2. Retain 90% of enrolled participants in research follow-up visits and activities throughout the funding cycle. 3. Initiate KPMP recruitment at CKD clinics in regional sites that serve the Black and Hispanic communities in years 6 and 7, respectively and maintain recruitment at those sites for the duration of the funding cycle. 4. Broaden in person, expand virtual and live community engagement activities for education and reciprocal interactions about kidney health, KPMP participation and biomedical research in general.

目标。克利夫兰慢性肾脏病招募网站 (CLE-CKD-RS) 已成为 KPMP 成员 自五年前成立以来，将继续招募一群患有糖尿病肾病的 CKD 患者 (DKD) 和高血压归因的 CKD (H-CKD)，以我们已取得的成功为基础。为了满足我们的 拟议的招募目标，我们将把患者筛查范围扩大到克利夫兰诊所主校区 区域设施中的医学诊所和 CKD 诊所，重点是为少数族裔社区提供服务的场所。 CLE- CKD-RS 将加强和扩大与不同社区的关系，以培养信任并确保 克利夫兰 KPMP 队列反映了肾脏疾病负担最重的人群。 背景。肾脏疾病是常见、昂贵且致命的疾病。肾脏精准医学项目 (KPMP) 正在建立一个资源，该资源将具有患者级别的临床数据集和分子表型，以识别隐藏的、 肾脏疾病患者的临床可操作亚组，以发现机制、生物标志物和 新的治疗方法。 KPMP 假设建议整合多维患者数据、组学水平 分子数据和基因组序列的变异将产生所需创新所需的工具。 CLE-CKD-RS：与 KPMP 的协同作用和价值。在第一个资助周期中，CLE-CKD-RS 研究团队已 成功执行 KPMP 协议，以合乎道德且安全的方式进行注册、活检并保留多元化的 KPMP 队列 参与者。此外，CLE-CKD-RS 还成立了一个积极参与的社区咨询委员会，并使用 向医疗和患者社区宣传 KPMP、肾脏疾病负担的机会 以及促进肾脏健康的方法。尽管 KPMP 活动先是暂停，然后又放缓 为了应对新冠肺炎大流行的公共卫生反应，CLE-CKD-RS 使用远程医疗工具来跟踪我们的队列 并在允许的情况下迅速重新开始活动。这段经历为以后的黑天鹅事件做好了准备。 CLE-CKD-RS 团队的成员在 KPMP 工作组和委员会中担任成员和领导者。 我们参与了两项由机会池基金资助的 CKD 扩展临床表型研究 通过赢得机会池资金，吸引其他当地调查团体加入 KPMP。建立在 鉴于这些成功，我们提出以下里程碑： 1. 每年从符合条件的 H-CKD 患者中安全、合乎道德地收集 30-40 个研究肾活检样本 或 DKD，5 年资助期内目标总注册人数为 180 名 CKD 参与者。 2. 在整个资助周期内保留 90% 的注册参与者参与研究后续访问和活动。 3. 在为黑人和西班牙裔社区服务的区域站点的 CKD 诊所启动 KPMP 招募 分别在第 6 年和第 7 年，并在供资周期期间维持这些地点的招聘。 4. 扩大面对面的、虚拟的和现场的社区参与活动，以促进教育和互惠 关于肾脏健康、KPMP 参与和一般生物医学研究的互动。