Brozova L, Schwarz D, Snabl I, Kalina J, Pavlickova B, Komenda M, Jarkovský J, Němec P, Horinek D, Stefanikova Z, Pour L, Hájek R, Maisnar V
Klin Onkol. 2017 Summer;30(Supplementum2):43-50. doi: 10.14735/amko20172S43.
The Registry of Monoclonal Gammopathies (RMG) was established by the Czech Myeloma Group in 2007. RMG is a registry designed for the collection of clinical data concerning diagnosis, treatment, treatment results and survival of patients with monoclonal gammopathies. Data on patients with monoclonal gammopathy of undetermined significance (MGUS), Waldenström macroglobulinaemia (WM), multiple myeloma (MM) or primary AL ("amyloid light-chain") amyloidosis are collected in the registry.
Nineteen Czech centres and four Slovak centres currently contribute to the registry. The registry currently contains records on more than 5,000 patients with MM, almost 3,000 patients with MGUS, 170 patients with WM and 26 patients with primary AL amyloidosis, i.e. more than 8,000 records on patients with monoclonal gammopathies altogether.
This paper describes technology employed for the collection, storage and subsequent online visualisation of data. The CLADE-IS platform is introduced as a new system for the collection and storage of data from the registry. The form structure and functions of the new system are described for all diagnoses in general; these functions facilitate data entry to the registry and minimise the error rate in data. Publicly available online visualisations of data on patients with MGUS, WM, MM or primary AL amyloidosis from all Czech or Slovak centres are introduced, together with authenticated visualisations of data on patients with MM from selected centres.
The RMG represents a data basis that makes it possible to monitor the disease course in patients with monoclonal gammopathies on the population level.Key words: Registry of Monoclonal Gammopathies - RMG - registries - monoclonal gammopathies - CLADE-IS - data visualisation - database.
单克隆丙种球蛋白病登记处（RMG）由捷克骨髓瘤研究小组于2007年设立。RMG是一个用于收集有关单克隆丙种球蛋白病患者诊断、治疗、治疗结果和生存情况的临床数据的登记处。登记处收集意义未明的单克隆丙种球蛋白病（MGUS）、华氏巨球蛋白血症（WM）、多发性骨髓瘤（MM）或原发性AL（“淀粉样轻链”）淀粉样变性患者的数据。
目前有19个捷克中心和4个斯洛伐克中心向该登记处提供数据。该登记处目前包含5000多名MM患者、近3000名MGUS患者、170名WM患者和26名原发性AL淀粉样变性患者的记录，即总共8000多条单克隆丙种球蛋白病患者的记录。
本文描述了用于数据收集、存储及后续在线可视化的技术。介绍了CLADE-IS平台作为从登记处收集和存储数据的新系统。总体上针对所有诊断描述了新系统的表单结构和功能；这些功能便于向登记处输入数据并将数据错误率降至最低。介绍了来自所有捷克或斯洛伐克中心的MGUS、WM、MM或原发性AL淀粉样变性患者数据的公开在线可视化，以及来自选定中心的MM患者数据的认证可视化。
RMG是一个数据基础，使得在人群层面监测单克隆丙种球蛋白病患者的病程成为可能。关键词：单克隆丙种球蛋白病登记处 - RMG - 登记处 - 单克隆丙种球蛋白病 - CLADE-IS - 数据可视化 - 数据库
