|
Frequently Asked
Questions
-
What is the National
Renal Registry (NRR)?
-
What are the purposes of
the NRR?
-
How is the NRR organized?
-
Who reports to the NRR?
-
How can I participate in
the NRR?
-
What are the benefits of
participating in the NRR?
-
What about
confidentiality?
What is the 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 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.
Back to top
What are the purposes of
the 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.
Back to top
How is the NRR
organized?
The NRR is co-sponsored by
the:
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:
Back to top
Who reports to the NRR?
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.
Back to top
How can I participate in
the 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 in promoting the welfare of patients on RRT.
To participate, just simply
register your centre with the NRR.
Click here to register online.
Back to top
What are the benefits of participation?
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.
Back to top
What about
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.
Back to top |
