Study on establishment of an on－line registry of hereditary kidney diseases in children
10. 3760∕cma. j. issn. 2095_428X. 2019. 05. 005
- VernacularTitle:基于网络建立儿童遗传性肾脏病注册登记系统的研究
- Author:
Fang WANG
1
;
Haiyue DENG
;
Yanqin ZHANG
;
Wei LI
;
Hai WANG
;
Jie DING
Author Information
1. 北京大学第一医院儿科100034
- Keywords:
Registry;
Hereditary kidney disease;
Child;
On_line;
Multi_center
- From:
Chinese Journal of Applied Clinical Pediatrics
2019;34(5):338-340
- CountryChina
- Language:Chinese
-
Abstract:
Objective To explore the feasibility of establishing such an on_line registry of hereditary kidney diseases in Chinese children. Methods Selecting disease categories,designing input parameters,data quality and secu_rity are key factors of establishing an on_line registry of hereditary kidney diseases including general information,clini_cal data,relevant examinations,genetic testing,medication and follow_up. Results The first on_line,multi_cen_tered registry of children with hereditary kidney diseases in China was established using Java language and MySQL data_base. It contained 1 580 parameters and covered 6 major hereditary kidney diseases including Alport syndrome,protei_nuria related kidney disease,renal tubular disease,renal cystic disease,congenital anomalies of kidney and urinary tract and other hereditary kidney diseases. To date,a total of about 2 200 families from 32 tertiary hospitals have been regis_tered. About 648 families have well_documented follow_up records with a maximum follow_up of 13. 5 years. The registration system has data screening,export and simple statistical functions. The registry system had a clear interface, and was convenient and friendly to use. The input data could be real_time updated,and dedicated personnel was re_sponsible for data review and quality control to ensure security and reliability. Conclusions The on_line registry of children with hereditary kidney diseases not only facilitates standardized management of patients. Moreover,it provides a platform and a good foundation for the establishment and expansion of clinical research cohort.
