A renal registry is a database which collects the information of the renal patients in different hospitals and centres. The data usually include the age, sex and the race of the patients, their diagnosis and the treatment, such haemodialysis and peritoneal dialysis.
It is a very useful tool For example, the combined data will let us have an idea of the disease incidence in the area. In Hong Kong, the number of new 157/million population. This figure is important for the planning of the renal services in Hong Kong. It will give us an idea of the age of the people commonly affected. It also gives us an idea of what is the commonest cause of kidney failure. In Hong Kong, 30 years ago, chronic glomerulonephritis is the commonest cause and now diabetic nephropathy is the commonest. The registry will also give us a trend of the change in the disease cause.
It also looks into the treatment methods and its complications. Finally, if the patient dies, it gives the cause of the death which is also very important.
The Hospital Authority of Hong Kong (HA) maintains the Hong Kong Renal Registry since 2005 and is generating very useful data every year. However, it only has the data from HA patients and it covers about 95% of the patients on dialysis or transplant. Those in the private hospitals and centres are not included.
Private patients are in general older than the HA patients and usually with more associated illness. The treatment in the HA is mainly CAPD while the treatment in the private centres are mainly HD. They are two different set of patients. Having a private patient renal registry will shed light on this important sub-group of patients.
For this reason, the Hong Kong Nephrology Group is building a Private Patient Renal Registry (the PPRR). In our PPRR, we place great emphasis on patient data privacy. The patients would only be identified by a Renal Registry Index (RRI), which was generated by combining the surname and the first 4 characters of the HKID card. In this way the RRI would be unique but his privacy would be protected. We would not collect the name of the attending doctor as this is not relevant in our project.
We are now developing the software to collect the patient data and shall start a small pilot study in May this year. We shall expect some fine tuning and if everything goes fine, we shall launch the system on 1 July, 2016. In order to ensure good accessibility, we shall publish the aggregated data on the HKNG home page once every year. Hopefully our first report will be up in the home page in February, 2017.
For information on kidney diseases and the treatment methods, please visit our kidney classroom site.