Design and implementation of the first nationwide, web-based Chinese Renal Data System (CNRDS)

BackgroundIn 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.MethodsThe 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.ResultsCurrently, 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.ConclusionsCNRDS 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.

[1]  Kjell Krüger.  [Electronic medical records should be structured]. , 2007, Tidsskrift for den Norske laegeforening : tidsskrift for praktisk medicin, ny raekke.

[2]  Weiming Zhang,et al.  Dialysis status in China: a report from the Shanghai Dialysis Registry (2000-2005). , 2009, Ethnicity & disease.

[3]  Steve Wheeler,et al.  How smartphones are changing the face of mobile and participatory healthcare: an overview, with example from eCAALYX , 2011, Biomedical engineering online.

[4]  Nadine Schuurman,et al.  A Web-based graphical user interface for evidence-based decision making for health care allocations in rural areas , 2008 .

[5]  G. Eknoyan,et al.  National Kidney Foundation Practice Guidelines for Chronic Kidney Disease: Evaluation, Classification, and Stratification , 2003, Annals of Internal Medicine.

[6]  T. Lim,et al.  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? , 2008, Nephrology.

[7]  P. Roderick,et al.  The UK Renal Registry , 2001 .

[8]  Lawrence M. Fagan,et al.  Research Paper: The PEN-Ivory Project: Exploring User-interface Design for the Selection of Items from Large Controlled Vocabularies of Medicine , 1996, J. Am. Medical Informatics Assoc..

[9]  D. Sillence,et al.  Fabry disease: Baseline medical characteristics of a cohort of 1765 males and females in the Fabry Registry , 2007, Journal of Inherited Metabolic Disease.

[10]  S. Reijneveld,et al.  A structured registration program can be validly used for quality assessment in general practice , 2009, BMC health services research.

[11]  Lee Schwamm,et al.  Designing a sustainable national registry for stroke quality improvement. , 2006, American journal of preventive medicine.

[12]  Ross Ward,et al.  United States Renal Data System , 2011 .

[13]  Xiangmei Chen,et al.  Epidemiology, Major Outcomes, Risk Factors, Prevention and Management of Chronic Kidney Disease in China , 2007, American Journal of Nephrology.

[14]  Roy T. Fielding,et al.  Principled design of the modern Web architecture , 2000, Proceedings of the 2000 International Conference on Software Engineering. ICSE 2000 the New Millennium.

[15]  Tao Wang,et al.  Frequencies of hepatitis B and C infections among haemodialysis and peritoneal dialysis patients in Asia-Pacific countries: analysis of registry data. , 2009, Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association.

[16]  Jing Xu,et al.  Scientific Publications in Nephrology and Urology Journals from Chinese Authors in East Asia: A 10-Year Survey of the Literature , 2011, PloS one.

[17]  Jeffrey P. Krischer,et al.  An automated communication system in a contact registry for persons with rare diseases: scalable tools for identifying and recruiting clinical research participants. , 2009, Contemporary clinical trials.

[18]  D. Parkin,et al.  The evolution of the population-based cancer registry , 2006, Nature Reviews Cancer.

[19]  J. Blaya,et al.  E-health technologies show promise in developing countries. , 2010, Health affairs.

[20]  Jennifer Nan,et al.  From design to implementation - The Joint Asia Diabetes Evaluation (JADE) program: A descriptive report of an electronic web-based diabetes management program , 2010, BMC Medical Informatics Decis. Mak..

[21]  Joseph Muenzer,et al.  The MPS I registry: design, methodology, and early findings of a global disease registry for monitoring patients with Mucopolysaccharidosis Type I. , 2007, Molecular genetics and metabolism.

[22]  G. Eysenbach.  Medicine 2.0: Social Networking, Collaboration, Participation, Apomediation, and Openness , 2008, Journal of medical Internet research.

[23]  Yiu Wing Ho,et al.  Renal Registry and Peritoneal Dialysis Management: The Hong Kong Perspective , 2008, Peritoneal dialysis international : journal of the International Society for Peritoneal Dialysis.

[24]  Aps Disney,et al.  Report of renal failure treatment in Australia and New Zealand from the dialysis and transplant registry (ANZDATA) , 1995 .

[25]  Hayden B Bosworth,et al.  Racial differences in hypertension knowledge: effects of differential item functioning. , 2009, Ethnicity & disease.

[26]  Tracy Hampton.  Parkinson disease registry launched. , 2005, JAMA.

[27]  Alejandro R. Jadad,et al.  Web 2.0: Could it help move the health system into the 21st century? , 2006 .

[28]  Gunilla C. Nilsson,et al.  The Use of the Personal Digital Assistant (PDA) Among Personnel and Students in Health Care: A Review , 2008, Journal of medical Internet research.

[29]  W. Sujansky,et al.  The benefits and challenges of an electronic medical record: much more than a "word-processed" patient chart. , 1998, The Western journal of medicine.

[30]  J. Qian,et al.  Peritoneal Dialysis in Shanghai , 2008, Peritoneal dialysis international : journal of the International Society for Peritoneal Dialysis.

[31]  L. Zuo,et al.  Current burden and probable increasing incidence of ESRD in China. , 2010, Clinical nephrology.