The National Renal Registry (NRR) collects information on patients on renal replacement therapy (RRT); i.e. dialysis and kidney transplantation. This information is needed for the estimation of treatment rates in the country, as well as to assist the Ministry of Health (MOH), Non-Governmental Organization, private providers and industry in the planning and evaluation of RRT services.
The NRR has its origin in the Dialysis and Transplant Registry established by the Department of Nephrology in 1992. It was subsequently transferred over to the Malaysian Society of Nephrology in order to expand its coverage to include all patients on renal replacement therapy in the country. The Association of Dialysis Medical Assistants and Nurses (ADMAN) is one of the NRR sponsors. The Clinical Research Centre (CRC) of Hospital Kuala Lumpur provides the epidemiology, statistic and information technology support to NRR.
The objectives of the NRR are to:
- Determine the disease burden attributable to End Stage Renal Disease (ESRD), and its geographic and temporal trends in Malaysia.
- Determine the outcomes, and factors influencing outcomes of RRT.
- Evaluate RRT program.
- Stimulate and facilitate research on RRT and ESRD.
- Maintain the national renal transplant waiting list.
The NRR is co-sponsored by the:
- Malaysian Society of Nephrology.
- Association of Dialysis Medical Assistant and Nurses.
An Advisory Committee has been established by the sponsors to oversees the operations of the registry and MOSS. This committee role is to ensure that the NRR stay focus on its objectives, and to assure its continuing relevance and justification. Interested parties including source data producers, Renal Registry Unit and target groups or users are represented on this committee.
The NRR organization is as follows:
The NRR receives data on RRT from RRT providing centres.The individual doctors, medical assistants and nurses who care for patients on RRT, voluntarily report data to the NRR. This is the most important source of data.
NRR so verify with the National Vital Registration System (Jabatan Pendaftaran Negara) to determining mortality outcomes of patients reported lost to follow-up.
For the NRR to succeed, ideally all health professionals who have anything to do with RRT ought to report to the NRR. Unlike communicable disease, renal failure however is not a reportable disease. We urge you to do your bit for our community, and help NRR obtain the information so crucial in promoting the welfare of patients on RRT.
To participate, just simply register your centre with the NRR.
Apart from doing your bit for our community, here are some other benefits to participating in NRR:
- All NRR registered patients who are eligible for cadaver renal transplant will be automatically listed in the eMOSS.
- Invitation to all functions organized by the NRR.
- Acknowledgement in all publications of the NRR.
- Personal copy of all NRR publications free of charge.
- Free listing in the "Directory of Dialysis Centres in Malaysia", an annual publication by NRR.
- Free listing in the NRR's web site. Click here for listing of NRR participants.
- Tap into a network of like-minded people from diverse professional disciplines and backgrounds.
Current legislation allows doctors to release their patients' data to persons demonstrating a need, which is essential to public health and safety. The NRR meets this requirement.
The NRR have also developed strict policies and procedures to maintain confidentiality in disclosure of data.