National Renal Registry
 

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 National Renal Registry (NRR) has its origin in the Dialysis and Transplant Registry established by the Department of Nephrology in 1992. The sponsors of NRR are the Malaysian Society of Nephrology (MSN) and Association of Dialysis Medical Assistants and Nurses (ADMAN).
 

The objectives of NRR are to:

1. Determine the disease burden attributable to End Stage Renal Disease (ESRD), and its geographic and temporal trends in Malaysia.

2. Determine the outcomes, and factors influencing outcomes of Renal Replacement Therapy.

3. Evaluate the RRT program.

4. Stimulate and facilitate research on RRT and ESRD.

5. Maintain the national renal transplant waiting list.
    

The NRR organization is as follows:

Sponsors

The National Renal Registry (NRR) and Malaysian Organ Sharing System (MOSS) are sponsors by the Malaysian Society of Nephrology and the Dialysis Medical Assistants and Nurses.

Advisory Committee.

This is the committee established by the sponsor to oversee the operations of the registry and MOSS. Interested parties including source data producers, Renal Registry Unit and target groups or users are represented on this committee.

National Renal Registry Office

The NRR office is the coordinating center that collects and analyses the data. It publishes the annual report of Malaysian Dialysis & Transplant Registry and the Directory or Dialysis Centres in Malaysia. The Clinical Registry Manager (CRM) oversees the daily operation of the NRR. The Clinical Research Centre of Hospital Kuala Lumpur provides the epidemiology, statistic and information technology support to NRR.

Source Data Producers

These are the NRR participating RRT centres that collect the required data. It is the most critical and yet difficult element of the system. It has to be systematic and uniform, and producers of source data need to be trained and motivated to ensure high data quality.

Users or Target groups

These are the individuals or institutions to whom the regular registry reports are addressed. It is their needs for information to assist in the planning and implementing disease treatment, control and prevention activity that justify the investment in the registry. They include:
1. the Renal community
2. the RRT provider
3. the Public health practitioner
4. the Decision maker in various government and non-government agencies who have responsibilities for any aspects of ESRD treatment, prevention and control
5. the Researcher with an interest in ESRD and RRT.
6. the press and the public.
 

Register to participate in NRR

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 to promoting the welfare of patients on RRT.

Click here to register online

Benefits of participating in NRR

Apart from doing your bit for our community, here are some other benefits of 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.

• Tap into a network of like-minded people from diverse professional disciplines and backgrounds.

Data confidentiality

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.