Poyan Mehr Ali, Sadeghi-Najafabadi Maryam, Chau Kristi, Messmer Joseph, Pai Rima, Roy Neil, Friedman David, Pollak Martin R, Schlondorff Johannes, Naljayan Mihran, Singh Tripti, Lecker Stewart H, Rodby Roger, Germain Michael, Rennke Helmut, Stillman Isaac E
Division of Nephrology and Department of Medicine, Beth Israel Deaconess Medical Center and Harvard Medical School, Boston, Massachusetts, USA.
Section of Nephrology and Hypertension and Department of Medicine, The Louisiana State University Health Sciences Center, New Orleans, Louisiana, USA.
Kidney Int Rep. 2018 Sep 21;4(1):20-29. doi: 10.1016/j.ekir.2018.09.012. eCollection 2019 Jan.
Glomerular kidney disorders account for a significant proportion of chronic kidney disease and end-stage renal disease worldwide. Nevertheless, major obstacles make breakthrough progress in diagnosis and cure an ongoing challenge. Here we report the creation of a "grassroots" initiative that aims to provide new opportunities for nephrologists, pathologists, basic and clinical scientists, patients, and industry partners to collaborate in the field of glomerular kidney disease. Members of the medical community, including trainees, nephrologists, and nephropathologists, can participate in the open-access, Web-based, multidisciplinary clinical video case conferences, which provide "peer-to-peer" exchange of clinical and pathological expertise combined with a formal didactic curriculum. Participants can also join other aspects of the broader initiative. These include the participation in a multisite research study to facilitate enrollment of patients into a longitudinal clinical data and biorepository for glomerular kidney disorders. Items included in this prospective registry include the following: an ontology-based patient medical history, which is regularly updated; interval collection and storage of blood and urine samples; DNA collection; and a contact registry for patients who wish to participate in clinical trials. Participating sites and external scientists can leverage access to the database to pursue genetic, biomarker, epidemiological, and observational clinical effectiveness studies. Patients can independently sign up for a supplementary contact registry to participate in clinical trials if eligible. The broad spectrum of activities within this initiative will foster closer collaboration among trainees, practicing nephrologists, pathologists, and researchers, and may help to overcome some of the barriers to progress in the field of glomerular kidney disease.
肾小球肾病在全球慢性肾脏病和终末期肾病中占很大比例。然而，主要障碍使得在诊断和治疗方面取得突破性进展仍然是一项挑战。在此，我们报告一项“基层”倡议的创建，该倡议旨在为肾病学家、病理学家、基础和临床科学家、患者及行业合作伙伴在肾小球肾病领域的合作提供新机会。医学界成员，包括实习生、肾病学家和肾病理学家，可参加开放获取、基于网络的多学科临床视频病例会议，这些会议提供临床和病理专业知识的“点对点”交流，并结合正式的教学课程。参与者还可参与更广泛倡议的其他方面。这些方面包括参与一项多中心研究，以促进将患者纳入肾小球肾病纵向临床数据和生物样本库。这个前瞻性登记册包含的项目如下：定期更新的基于本体的患者病史；血液和尿液样本的定期采集与存储；DNA采集；以及为希望参与临床试验的患者设立的联系登记册。参与站点和外部科学家可利用对该数据库的访问权限开展基因、生物标志物、流行病学和观察性临床疗效研究。符合条件的患者可独立报名参加补充联系登记册以参与临床试验。该倡议内广泛的活动将促进实习生、执业肾病学家、病理学家和研究人员之间更紧密的合作，并可能有助于克服肾小球肾病领域进展的一些障碍。
