This article has Open Peer Review reports available.
Design and implementation of the first nationwide, web-based Chinese Renal Data System (CNRDS)
© Xie et al; licensee BioMed Central Ltd. 2012
Received: 17 August 2011
Accepted: 28 February 2012
Published: 28 February 2012
In April 2010, with an endorsement from the Ministry of Health of the People's Republic of China, the Chinese Society of Nephrology launched the first nationwide, web-based prospective renal data registration platform, the Chinese Renal Data System (CNRDS), to collect structured demographic, clinical, and laboratory data for dialysis cases, as well as to establish a kidney disease database for researchers and policy makers.
The CNRDS program uses information technology to facilitate healthcare professionals to create a blood purification registry and to deliver an evidence-based care and education protocol tailored to chronic kidney disease, as well as online forum for communication between nephrologists. The online portal https://www.cnrds.net is implemented as a Java web application using an Apache Tomcat web server and a MySQL database. All data are stored in a central databank to establish a Chinese renal database for research and publication purposes.
Currently, over 270,000 clinical cases, including general patient information, diagnostics, therapies, medications, and laboratory tests, have been registered in CNRDS by 3,669 healthcare institutions qualified for hemodialysis therapy. At the 2011 annual blood purification forum of the Chinese Society of Nephrology, the CNRDS 2010 annual report was reviewed and accepted by the society members and government representatives.
CNRDS is the first national, web-based application for collecting and managing electronic medical records of patients with dialysis in China. It provides both an easily accessible platform for nephrologists to store and organize their patient data and acts as a communication platform among participating doctors. Moreover, it is the largest database for treatment and patient care of end-stage renal disease (ESRD) patients in China, which will be beneficial for scientific research and epidemiological investigations aimed at improving the quality of life of such patients. Furthermore, it is a model nationwide disease registry, which could potentially be used for other diseases.
Chronic kidney disease (CKD) is a worldwide public health problem with an increasing incidence and prevalence, poor prognosis, and high treatment cost that affects people of all ages and demographic backgrounds . The annual rate of dialysis in Mainland China was 79.1 per million people (pmp) in 2008 . Renal replacement treatment for patients with end-stage renal disease (ESRD), including maintenance dialysis and transplantation, has created large economic burdens for patients and the government . As the number of newly diagnosed CKD cases in China increases annually , it is essential to establish a central database with up-to-date inputs about various aspects of renal disease for individual cases. Unfortunately, there is no national registry system for tracking dialysis data throughout the country [5, 6]. To create a shared database for dialysis centers and hospitals at a national level, the Chinese Society of Nephrology (CSN), with an endorsement from the Ministry of Health of the People's Republic of China, organized the establishment of the first nationwide, web-based renal registry system, the Chinese Renal Data System (CNRDS), to maintain the electronic records of laboratory tests and clinical practice for individual patient with CKD. The electronic portal https://www.cnrds.net was launched on May 1, 2010.
Disease registries, i.e., controlled lists of persons with a specified clinical condition and their associated data, are used to support public health and clinical research activities . Such registries have been used in cancer research since the 1940s as tools to estimate cancer incidence and support etiological exploration by recording cases reported within a defined time or place . Since then, multiple registries for many types of diseases have been used to assist the clinical research process [9–13]. Various national or regional renal registries, such as the United States Renal Data System (USRDS) , UK Renal Registry (UKRR) , Australia & New Zealand Dialysis and Transplant Registry (ANZDATA) , and the Hong Kong Renal Registry (HKRR) , have been developed to collect data on renal disease. One of the most important uses of a national renal registry is to track the provision of dialysis services in a country. There is an important responsibility for national renal registries to periodically publish data on the physiological and pathological condition of patients who are under dialysis treatment in an objective and anonymous fashion, as well as to enable the evaluation of the dialysis procedure and the prognosis of the patients. The variations in performance among dialysis providers are systematically documented in renal registries, which could be used for clinical audits to improve the quality of dialysis care . The CNRDS was established for the above purposes, and it was expected to provide the information needed for public health, monitoring the safety of therapeutic products and services, and for clinical research. The goal of this paper was to describe the technical details of the design and implementation of this web-based registry application.
Objective and design
The objectives of the CNRDS are to:
1. Design and implement a consolidated renal disease data system that will provide necessary information to determine the disease burden attributable to kidney disease, as well as its geographic distribution and temporal trends in Mainland China;
2. Report on the incidence, prevalence, and mortality rates and trends of renal disease over time by primary diagnosis, treatment modality, and other sociodemographic variables;
3. Develop and analyze aggregated data that will be helpful for the examination of the prevention and progression of renal disease;
4. Stimulate and facilitate scientific research for renal disease; and
5. Provide an online communication platform for nephrologists.
The CNRDS is implemented using a JavaEE three-tier, web-based architecture: 1) a web interface that interacts with the user, 2) a middle tier that contains the application's business logic, and 3) an integration tier that consists of the enterprise resources. The CNRDS runs on an Apache Tomcat web server and has a MySQL cluster as the back-end database.
Data collection forms
Case report forms
Case report forms
Past medical history
Activated vitamin D
Peritoneal equilibration test
Blood pressure measurement
Combined with other dialysis therapy
The information stored in the database is fully structured. Clinical information represented in a systematically structured format is the foundation of the downstream analytical and decision support programs. Previous studies demonstrate that structured electronic medical records can result in faster and more accurate data entry, are useful in daily clinical work , and can be used for valid research purposes and quality assessment . Our practice and other studies [25, 26] have revealed that structured data entry with well-designed and intelligent user interfaces minimizes the time and effort required to capture information.
CNRDS user roles and their authority
Create/activate/suspend ministerial managers, manage institutions, and modify/publish electronic CRFs.
Create/activate/suspend provincial users, release standard documents and make announcements, and retrieve and audit all cases.
Create/activate/suspend institutional users and retrieve and audit cases of this province.
Enter/update cases and retrieve and edit existing cases of his/her patients.
The system utilizes Hypertext Transfer Protocol Secure (HTTPS) for web server communication. HTTPS is a combination of the Hypertext Transfer Protocol (HTTP) with the Secure Socket Layer (SSL) protocol to provide encrypted communication and secure identification of a network web server. HTTP is unsecured and is subject to man-in-the-middle and eavesdropping attacks, which can allow attackers to gain access to website accounts and sensitive information. HTTPS is designed to withstand such attacks and is considered secure against such malfeasance .
We established MySQL master-slave replication for load-balance and, more importantly, for backup. Replication enables data from one MySQL database server (the master) to be replicated to one or more additional servers (the slaves). Because data is replicated to the slave(s), and the slave(s) can pause the replication process, it is possible to run backup services on the slave(s) without corrupting the corresponding master data . Further, a dumped database is packaged and transferred to a backup facility located in a different network zone every night.
Governance and technical support
The CNRDS program is governed by the CSN with support from the Ministry of Health of the People's Republic of China. The Information Technology team from the National Engineering Research Center for Beijing Biochip Technology (NERCBBT) supports all program-related technical and logistic matters encountered by the users. The IT support team also collects feedback and provides information on plans of updated versions, scheduled maintenance, bug reports, and technical tips.
Age and gender distributions of the enrolled hemodialysis patients
Age of initial dialysis
Average age, years (mean ± SD)
51.2 ± 15.8
The following key features are implemented for the current version of CNRDS: 1) collaborative access to data across multiple dialysis centers and hospitals with user authentication and role bases security, 2) intuitive electronic CRFs, 3) real-time data validation, integrity checks, and other mechanisms for ensuring data quality, 4) data audit capabilities, 5) SOP document storage and sharing, 6) central database and backups, 7) data export functions for statistical purposes, 8) data exchange interface for bulk import of data from other regional registries, and 9) online discussion forum.
Online discussion forum
Summary of online forum threads*
The CNRDS application programming interface (API)
Prior to the nationwide CNRDS, Shanghai, Beijing, and Zhejiang provinces established their own local renal registries. Indeed, these three registries have been running for several years and contain valuable data. In order to maximize the value of the previous investment, a RESTful web service API was developed for third party software providers to exchange their data with CNRDS. The RESTful web service was chosen due to its streaming capability and on-the-fly compression . The data exchange format is a customized XML schema, which is downloadable as an additional file of this manuscript (Additional file 1). Each regional registry was assigned a unique API key for discrimination. Because the API is an interface between machines, third party software vendors should ensure that the data they submit is validated and complete. Data validation rules are also performed on the CNRDS server; an error code will return if the submission contains abnormal data.
Features distribution among CNRDS and other renal registries
CRF authoring tool
Depending on the nature and diversified aspects of the disease, case report forms may differ significantly among disease registries. Even within a single disease, different treatments contain distinct information, e.g., hemodialysis and peritoneal dialysis do not share the same treatment forms (see Table 1). Additionally, tests, examinations, and treatments can change. Thus, it was beneficial to develop a registry system with enough flexibility to be configured to fit different case report forms without modifying the source code. The underlying EMR system that CNRDS is based on provides such flexibility. Trained users can utilize the comprehensive online CRF authoring tool to create new case report forms, edit existing ones, and publish the modification on-the-fly without software engineers' assistance. With a generic user interfaces for data capturing and processing, the underlying database table structure and the data-processing workflow were customized specifically for hemodialysis and peritoneal dialysis. Furthermore, the system is sufficiently flexible to be configured for other disease registries. As far as we known, none of the above surveyed registries provides this kind of flexibility.
Easy to access
The web-based user interface makes a large amount of multicenter users can easily access the CNRDS with their desktop browsers. No additional software is required to install into the client computer. When there's an update of the system, we only need to upgrade the server-side program. The end-users will get a fresh version when they login the next time. Nowadays, most renal registries are web-based. USRDS, UKRR, ANZDATA also support paper-based form submission. The Beijing and Zhejiang locale renal registries are built upon client/server architecture, which means every user who wants to submit data is required to install a specific client program.
Furthermore, the mobile interface makes it possible for physicians to access their patients' information anywhere with handheld devices.
Social networking is central to many Web 2.0 and Medicine 2.0 applications and involves the explicit modeling of connections between people, forming a complex network of relations, which in turn enables and facilitates collaboration and collaborative filtering processes . We introduced two social networking features: online discussion and messaging. The discussion forum was opened in the purpose of getting feedbacks of the system. Lately, we found the nephrologists are willing to share their experiences with others who are doing the same work. Other renal registries barely provide this kind of features.
High quality data are the key to the success of a disease registry. Because there are no full-time data managers, nephrologists or nurses themselves participate in the data submission after their daily medical work. They do not have enough time to explore the system and will only submit required data. A complex system is not adequate for this type of low-frequency user. Therefore, it was important to establish a system with a simple structure and intuitive user interface. Data required by the CNRDS, such as basic patient information and laboratory tests, are partially stored in the participating institutions' hospital information systems (HISs) or clinical information systems (CISs). However, we cannot import any data from local HISs or CISs due to the variance of those information systems and hospitals' data sharing policies. Thus, it is enormously redundant to have doctors retype these data for the CNRDS.
The successful implementation of the CNRDS is based on the collaborative efforts of multiple institutions with expertise in nephrology, medical oncology, pathology, epidemiology, and computer science. The CNRDS offers a number of benefits, including: 1) standardized data elements, vocabulary, and forms for data collection, 2) computerized audits and data quality control, 3) submission of data through the internet in an effective, secure, and easy to use way, and 4) the ability to exchange information with other registry systems.
The web-based CNRDS application plays a role as an online clinical information system, as well as a health administration database. Nephrologists can use the system to reorganize the process of care delivery and establish a renal registry to manage, track, and analyze large amounts of clinical information to improve decision making. The database can also potentially be used for clinical research and administrative statistics. Users can export their hospital's/province's/national data (restricted by their role) into spreadsheets for further analysis. In the near future, investigation of the data may reveal the status and trends of renal disease in Mainland China by utilizing the CNRDS system.
The establishment of the CNRDS also demonstrates that state-of-the-art information technology can facilitate implementation of a comprehensive nationwide disease registry. The underlying information system that utilizes dCRF technology is flexible and can be adapted for other disease registries at a national scale.
XC and JC are members of Chinese Academy of Engineering. XC is the director of Chinese PLA Institute of Nephrology, the chairman of the CSN. JC is a Cheung Kong professor of Tsinghua University School of Medicine and the director of National Engineering Research Center for Beijing Biochip Technology (NERCBBT). DZ, XS are chief physicians of the department of nephrology, Chinese PLA General Hospital. JW, QY, YZ are IT specialists at NERCBBT. FX is a Ph.D. student at Tsinghua University School of Medicine, his research interesting is focused on bringing advanced Information Technology to biomedical area to solve complex problems.
The authors acknowledge the committee members of the CSN for their support in launching and promulgating the CNRDS. The development of the CNRDS was supported by grants from the National High Technology Program (2009AA022708), the National Program on Key Basic Research Project (2007CB507400) from the Ministry of Science and Technology, China, and the Health Industry Special Research Project (201002010) from the Ministry of Health, China.
- Levey AS, Coresh J, Balk E, Kausz AT, Levin A, Steffes MW, Hogg RJ, Perrone RD, Lau J, Eknoyan G, National Kidney Foundation: National Kidney Foundation practice guidelines for chronic kidney disease: evaluation, classification, and stratification. Ann Intern Med. 2003, 139: 137-147.View ArticlePubMedGoogle Scholar
- Zuo L, Wang M: Current burden and probable increasing incidence of ESRD in China. Clin Nephrol. 2010, 74 (S1): 20-22.Google Scholar
- Xu J, Mao ZG, Kong M, Hu LH, Ye CY, Xu CG, Rong S, Sun LJ, Wu J, Dai B: Scientific publications in nephrology and urology journals from Chinese authors in East Asia: a 10-year survey of the literature. PLoS One. 2011, 6 (4): e14781-10.1371/journal.pone.0014781.View ArticlePubMedPubMed CentralGoogle Scholar
- Xie YS, Chen XM: Epidemiology, major outcomes, risk factors, prevention and management of chronic kidney disease in China. Am J Nephrol. 2008, 28: 1-7. 10.1159/000108755.View ArticlePubMedGoogle Scholar
- Yao Q, Zhang W, Qian J: Dialysis status in China: a report from the Shanghai dialysis registry (2000-2005). Ethn Dis. 2009, 19 (S1): 23-26.Google Scholar
- Johnson DW, Dent H, Yao Q, Tranaeus A, Huang CC, Han DS, Jha V, Wang T, Kawaguchi Y, Qian JQ: Frequencies of hepatitis B and C infections among haemodialysis and peritoneal dialysis patients in Asia-Pacific countries: analysis of registry data. Nephrol Dial Transplant. 2009, 24: 1598-1603. 10.1093/ndt/gfn684.View ArticlePubMedGoogle Scholar
- Richesson RL, Lee HS, Cuthbertson D, Lloyd J, Young K, Krischer JP: An automated communication system in a contact registry for persons with rare diseases: scalable tools for identifying and recruiting clinical research participants. Contemp Clin Trials. 2009, 30 (1): 55-62. 10.1016/j.cct.2008.09.002.View ArticlePubMedGoogle Scholar
- Parkin DM: The evolution of the population-based cancer registry. Nat Rev Cancer. 6 (8): 603-612.Google Scholar
- Pastores GM, Arn P, Beck M, Clarke JT, Guffon N, Kaplan P, Muenzer J, Norato DY, Shapiro E, Thomas J, Viskochil D, Wraith JE: The MPS I registry: design, methodology, and early findings of a global disease registry for monitoring patients with Mucopolysaccharidosis Type I. Mol Genet Metab. 2007, 91 (1): 37-47. 10.1016/j.ymgme.2007.01.011.View ArticlePubMedGoogle Scholar
- Eng CM, Fletcher J, Wilcox WR, Waldek S, Scott CR, Sillence DO, Breuning F, Charrow J, Germain DP, Nicholls K, Banikazemi M: Fabry disease: baseline medical characteristics of a cohort of 1765 males and females in the Fabry Registry. J Inherit Metab Dis. 2007, 30 (2): 184-192. 10.1007/s10545-007-0521-2.View ArticlePubMedGoogle Scholar
- Hampton T: Parkinson disease registry launched. JAMA. 2005, 293 (2): 149-10.1001/jama.293.2.149.View ArticlePubMedGoogle Scholar
- Ko GT, So WY, Tong PC, Le Coguiec F, Kerr D, Lyubomirsky G, Tamesis B, Wolthers T, Nan J, Chan J: From design to implementation--the Joint Asia Diabetes Evaluation (JADE) program: a descriptive report of an electronic web-based diabetes management program. BMC Med Inform Decis Mak. 2010, 10: 26-10.1186/1472-6947-10-26.View ArticlePubMedPubMed CentralGoogle Scholar
- Schwamm L, Reeves MJ, Frankel M: Designing a sustainable national registry for stroke quality improvement. Am J Prev Med. 2006, 31 (6S2): S251-S257.View ArticlePubMedGoogle Scholar
- United States Renal Data System. [http://www.usrds.org/]
- UK Renal Registry. [http://www.renalreg.com]
- Australia & New Zealand Dialysis and Transplant Registry (ANZDATA). [http://www.anzdata.org.au]
- Ho YW, Leung CB, Choy BY, Fung KS, Wong PN, Cheng YL, Lai WM, Yong SP, Kwan TH, Lo S, Sin H, Lam J, Chau KF: Renal registry and peritoneal dialysis management: the Hong Kong perspective. Perit Dial Int. 2008, 28 (Suppl 3): 12-14.Google Scholar
- Lim TO, Goh A, Lim YN, Morad Z: Review article: use of renal registry data for research, health-care planning and quality improvement: what can we learn from registry data in the Asia-Pacific region?. Nephrology. 2008, 13 (8): 745-752. 10.1111/j.1440-1797.2008.01044.x.View ArticlePubMedGoogle Scholar
- Yao Q, Zhang W, Qian J: Peritoneal dialysis in Shanghai. Perit Dial Int. 2008, 28 (Suppl 3): 42-45.Google Scholar
- Zhang W, Qian J: Current situation in dialysis registration in China and other countries. Chin J Blood Purif. 2007, 6 (9): 468-470.Google Scholar
- Chen XM: Blood Purification Standard Operation Procedure. 2010, People's Military Medical PressGoogle Scholar
- Chen XM: Peritoneal Dialysis Standard Operation Procedure. 2010, People's Military Medical PressGoogle Scholar
- Krüger K: Electronic medical records should be structured. Tidsskr Nor Laegeforen. 2007, 127 (16): 2090-2093.PubMedGoogle Scholar
- Fokkens AS, Wiegersma PA, Reijneveld SA: A structured registration program can be validly used for quality assessment in general practice. BMC Health Serv Res. 2009, 9: 241-10.1186/1472-6963-9-241.View ArticlePubMedPubMed CentralGoogle Scholar
- Poon AD, Fagan LM, Shortliffe EH: The PEN-Ivory project: exploring user-interface design for the selection of items from large controlled vocabularies of medicine. J Am Med Inform Assoc. 1996, 3 (2): 168-183. 10.1136/jamia.1996.96236285.View ArticlePubMedPubMed CentralGoogle Scholar
- Sujansky WV: The benefits and challenges of an electronic medical record: much more than a "word-processed" patient chart. West J Med. 1998, 169 (3): 176-183.PubMedPubMed CentralGoogle Scholar
- Deshpande A, Jadad AR: Web 2.0: could it help move the health system into the 21st century?. J Men's Health & Gender. 2006, 3 (4): 332-336.View ArticleGoogle Scholar
- Schuurman N, Leight M, Berube M: A Web-based graphical user interface for evidence-based decision making for health care allocations in rural areas. Int J Health Geogr. 2008, 7: 49-10.1186/1476-072X-7-49.View ArticlePubMedPubMed CentralGoogle Scholar
- Boulos MN, Wheeler S, Tavares C, Jones R: How smartphones are changing the face of mobile and participatory healthcare: an overview, with example from eCAALYX. Biomed Eng Online. 2011, 10: 24-10.1186/1475-925X-10-24.View ArticlePubMedPubMed CentralGoogle Scholar
- Blaya JA, Fraser HS, Holt B: E-health technologies show promise in developing countries. Health Aff (Millwood). 2010, 29 (2): 244-251. 10.1377/hlthaff.2009.0894.View ArticleGoogle Scholar
- Lindquist AM, Johansson PE, Petersson GI, Saveman BI, Nilsson GC: The use of the Personal Digital Assistant (PDA) among personnel and students in health care: a review. J Med Internet Res. 2008, 10 (4): e31-10.2196/jmir.1038.View ArticlePubMedPubMed CentralGoogle Scholar
- jQuery mobile framework. [http://jquerymobile.com]
- Wikipedia page of HTTP Secure. [http://en.wikipedia.org/wiki/HTTP_Secure]
- MySQL 5.0 reference manual: replication. [http://dev.mysql.com/doc/refman/5.0/en/replication.html]
- Fielding RT, Taylor RN: Principled design of the modern web architecture. ACM Trans Internet Technol. 2002, 2 (2): 115-150. 10.1145/514183.514185.View ArticleGoogle Scholar
- Eysenbach G: Medicine 2.0: social networking, collaboration, participation, apomediation and openness. J Med Internet Res. 2008, 10 (3): e22-10.2196/jmir.1030.View ArticlePubMedPubMed CentralGoogle Scholar
- The pre-publication history for this paper can be accessed here:http://www.biomedcentral.com/1472-6947/12/11/prepub
This article is published under license to BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.