GDCN Clinical Center-Advancing Clinical Research in Primary Glomerular Diseases

GDCN临床中心-推进原发性肾小球疾病的临床研究

• 批准号: 9315141
• 负责人: Ronald J Falk
• 金额: $ 79.55万
• 依托单位: UNIV OF NORTH CAROLINA CHAPEL HILL
• 依托单位国家: 美国
• 财政年份: 2013
• 资助国家: 美国
• 起止时间: 2013-09-16 至 2019-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9315141
• 关键词: 21 year old; Age; Alabama; Awareness; Biology; Biopsy; Canada; Case-Control Studies; Categories; Child; Childhood; Clinical; Clinical Research; Clinical assessments; Cohort Studies; Collaborations; Communities; Contracts; Data; Databases; Diagnosis; Disease; Eligibility Determination; Enrollment; Ensure; Environment; Focal Segmental Glomerulosclerosis; Foundations; Geography; Government; Grant; Hospitals; IGA Glomerulonephritis; Individual; Industry; Informed Consent; Institution; Intervention Studies; Kidney; Kidney Diseases; Laboratories; Life; Longitudinal cohort; Longitudinal cohort study; Membranous Glomerulonephritis; Nephrology; North Carolina; Outcome Measure; Parents; Pathogenesis; Pathologic; Patient-Focused Outcomes; Patients; Pediatric Hospitals; Population; Private Practice; Province; Quality of Care; Quality of life; Quebec; Recruitment Activity; Registries; Renal glomerular disease; Research; Research Project Grants; Resources; Sampling; Secure; Site; Standardization; Therapeutic Intervention; Time; Translational Research; Treatment Protocols; United States; Universities; Virginia; base; biomarker development; clinical care; cohort; data sharing; disease diagnosis; disease registry; experience; follow-up; healthy volunteer; human subject; improved; interest; pediatric patients; predict clinical outcome; prospective; public health relevance; response; success

DESCRIPTION (provided by applicant): For three decades we have been recruiting and retaining patients with glomerular diseases into inception cohorts in which patients, by signing informed consent, agree to be followed from the time of their disease diagnosis until they die. These inception cohorts currently include over 3,300 patients, and almost 2,000 patients with the four diseases of interest to this consortium: minimal change disease, focal segmental glomerulosclerosis, membranous nephropathy and IgA nephropathy. Our success at recruiting and retaining patients has relied upon our Glomerular Disease Collaborative Network (GDCN). The GDCN is a partnership between the University of North Carolina (UNC) and over 600 private practice nephrologists created for the purpose of conducting research. We now have over 28 years of experience in building inception cohorts, and making use of them in advancing research by participating in single- and multi-center translational, observational, quality-of-life and therapeutic intervention studies. We propose to participate in the this RFA "Advancing Clinical Research in Primary Glomerular Diseases" as an expanded GDCN Clinical Center based on the existing UNC GDCN in collaboration with the University of Alabama at Birmingham (UAB) and with most of the hospitals in Montreal, Canada that have formed their own glomerular disease registry. Our colleagues at Vanderbilt University and Virginia Commonwealth University will join the GDCN Clinical Center once the cohorts begin recruiting. We have included in our Center the Duke University David Murdock Registry of 9,000 healthy individuals and thus we have ready access to clinical information and banked bio samples for over 600 healthy subjects. The GDCN Clinical Center will cover much of the geography of the Southeastern portion of the United States and most institutions in Quebec province. Moreover, the institutions within the GDCN Clinical Center, which have demonstrated prowess in clinical and translational research, are proposing, and will propose, an array of translational science, observational and treatment protocols pertaining to each of the glomerular diseases of interest. The GDCN Clinical Center is more than ready to participate in the organizational and scientific collaborative efforts of this proposed multicenter consortium.

描述（由申请人提供）：三十年来，我们一直在招募和保留肾小球疾病患者进入初始队列，其中患者通过签署知情同意书，同意从疾病诊断开始接受随访，直至死亡。这些初始队列目前包括3,300多名患者，近2,000名患者患有该联盟关注的四种疾病：微小病变疾病、局灶节段性肾小球硬化、膜性肾病和伊加肾病。我们在招募和留住患者方面的成功依赖于我们的肾小球疾病协作网络（GDCN）。GDCN是北卡罗来纳州大学（University of North Carolina）与600多名私人执业肾病学家之间的合作伙伴关系，旨在进行研究。我们现在有超过28年的经验，建立初始队列，并利用它们通过参与单中心和多中心转化，观察，生活质量 和治疗干预研究。我们计划与亚拉巴马大学伯明翰分校（UAB）和加拿大蒙特利尔的大多数医院合作，在现有的GDCN的基础上，作为扩大的GDCN临床中心参与RFA“推进原发性肾小球疾病的临床研究”，这些医院已经形成了自己的肾小球疾病登记系统。一旦队列开始招募，我们在范德比尔特大学和弗吉尼亚联邦大学的同事将加入GDCN临床中心。我们的中心包括杜克大学大卫默多克登记的9,000名健康个体，因此我们可以随时访问600多名健康受试者的临床信息和库存生物样本。GDCN临床中心将覆盖美国东南部的大部分地区和魁北克省的大多数机构。此外，GDCN临床中心内的机构在临床和转化研究方面表现出了卓越的能力，正在提出并将提出一系列与每种感兴趣的肾小球疾病有关的转化科学，观察和治疗方案。GDCN临床中心已做好充分准备，参与该拟议多中心联盟的组织和科学协作工作。