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

基本信息

批准号：
8627688
负责人：
Ronald J Falk
金额：
$ 54.43万
依托单位：
UNIV OF NORTH CAROLINA CHAPEL HILL
依托单位国家：
美国
项目类别：
财政年份：
2013
资助国家：
美国
起止时间：
2013-09-16 至 2018-05-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/8627688
关键词：
21 year old Age Alabama Biological Markers Biology Biopsy Canada Case-Control Studies Categories Child Childhood Clinical Clinical Research Clinical assessments Cohort Studies Collaborations Communities Contracts Data Databases Development Diagnosis Disease Enrollment Ensure Environment Focal Segmental Glomerulosclerosis Foundations Geography Government Grant Health Hospitals Immunoglobulin A Individual Industry Informed Consent Institution Intervention Studies Kidney Kidney Diseases Laboratories Life Membranous Glomerulonephritis Nephrology North Carolina Outcome Outcome Measure Parents Pathogenesis Pathologic 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 Staging Standardization Therapeutic Intervention Time Translational Research Treatment Protocols United States Universities Virginia Work base child well being clinical care cohort data sharing disease diagnosis disease registry experience follow-up healthy volunteer human subject improved interest prospective response success

项目摘要

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患有肾小球疾病的患者进入初始队列，其中患者通过签署知情同意书，同意从疾病诊断到死亡期间接受跟踪。这些初始队列目前包括超过 3,300 名患者，以及近 2,000 名患有该联盟感兴趣的四种疾病的患者：微小病变、局灶节段性肾小球硬化、膜性肾病和 IgA 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 是北卡罗来纳大学 (UNC) 与 600 多名私人执业肾病专家之间的合作伙伴关系，旨在开展研究。我们现在在建立初始队列方面拥有超过 28 年的经验，并利用它们通过参与单中心和多中心转化、观察、生活质量来推进研究和治疗干预研究。我们建议以现有北卡罗来纳大学 GDCN 为基础，与阿拉巴马大学伯明翰分校 (UAB) 和蒙特利尔的大多数医院合作，作为扩大的 GDCN 临床中心，参与本次 RFA“推进原发性肾小球疾病的临床研究”，加拿大已经建立了自己的肾小球疾病登记处。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。我们的中心已纳入杜克大学 David Murdock 登记中心的 9,000 名健康个体，因此我们可以随时获取 600 多名健康受试者的临床信息和生物样本库。 GDCN 临床中心将覆盖美国东南部的大部分地区以及魁北克省的大部分机构。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强大的实力，正在并将提出一系列与每种感兴趣的肾小球疾病相关的转化科学、观察和治疗方案。 GDCN 临床中心已经准备好参与这个拟议的多中心联盟的组织和科学合作工作。